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Kiersten

Age 11, California

Meet Kiersten. Kiersten loves listening to music – Lady Gaga and Gwen Stefani are her favorites. She’s non-verbal but her facial expressions show that she knows what’s up. Kiersten has Severe HIE Brain Injury, Hydrocephalus, Epilepsy, Scoliosis, CVI, Right Knee Contracture, Reactive Airway Disease, GERD, Cerebral Palsy and Hypotonia. Kiersten had multiple brain surgeries in her first year, including shunt placement and revisions to drain the fluid from her brain (hydrocephalus). Ultimately, her shunt catastrophically failed, causing severe brain-injury. Kiersten requires 24/7 nursing care, medications, medical equipment, therapies, specialists, and uses a wheelchair to get around.

Though Kiersten is non-verbal, she loves social interaction. The ADA (Americans with Disabilities Act), IDEA (Individuals with Disabilities Education Act), and FAPE (Free and Appropriate Education) means she can be in the community with her peers and get daily of interaction and stimulation. These protections give her a way to learn to communicate and help her develop physically, mentally and emotionally.

Kiersten’s mother Debra says, “Health care is everything. It's her LIFE. We use ACA coverage [insurance through the health care exchanges] to give her much broader access to services than Medi-Cal and California Children’s Services can provide alone. I have to keep her on [insurance through the health care exchanges] because I’ve lost my job due to her high medical expenses (totally illegal, but that's what companies use at-will employment for). If I place her on my employer insurance I’m at high risk of discrimination and job loss.”

Submitted by Debra, Kiersten’s mother




 
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Anthony

Age 1, Missouri

Meet Anthony. Anthony loves therapy and making new sounds! He also loves tickles and hugs from his big sister. He has really enjoyed being out of the hospital and getting to explore the world around him.

Anthony has Down syndrome (Trisomy 21), Chronic Lung Disease (BPD), Pulmonary Hypertension, 3 Congenital Heart Defects (ASD, VSD, PDA), Hypothyroidism, weakened immune system with no know diagnosis, pyloric stenosis, profound hearing loss, severe astigmatism,and strabismus.

Anthony is trached and on a ventilator and oxygen 24/7. He is fed via a g-tube. He needs around-the-clock monitoring, which includes qualified home nursing care. He also needs extensive therapy (PT, OT, Speech), takes 14 daily medications, and uses lots of equipment and medical supplies.

Anthony’s mother, Teresa says: Anthony was not able to leave the hospital without 24 hour trained care. Myself and his father were trained, but his father is now our sole provider and needs to work to support our family and I alone couldn’t be his caretaker 24/7. We needed home nursing care which our private insurance would not cover, and we had too much in resources for Anthony to receive Medicaid outright. The hospital explained that the options were to get home nursing, or put him in medical foster care. The thought of doing that broke my heart. Here I am, highly educated with no debt other than my house and some savings, and they were telling me I wouldn't be able to get help for my son with a permanent disability. We applied for our state’s Medicaid waiver for children with developmental disabilities (called the “Sarah Lopez Waiver in Missouri), but were told it could take years. I reached out to our senator's office (Claire McCaskill) to ask for their help in expediting the process. Within a week, we received the waiver.

Submitted by Teresa, Anthony’s mother.

   

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Clark

Age 4, North Carolina

Meet Clark. Clark loves to play with and watch Peppa Pig, Daniel Tiger and Scooby Doo. Clark is a mini foodie and has not used his G-tube for nutrition in over a year. He enjoys the farmers market and picking out his snacks at the store, especially bringing his Dad a Redbull or Coffee. Clark loves to take trips to the pet store to look at the cats and bring home his cats lots of toys. Clark’s family thinks he may enjoy photography in the future because he loves to look at pictures. When he's not in therapy or school, Clark is playing with his older brother, sometimes roughly, and often you will find an argument over who gets to be Batman.

Clark has a rare chromosome 10p duplication, Autism, Hypotonia, a feeding tube, intestinal dysmotility, sensory processing difficulties, oral motor delays, and anxiety from medical visits. Clark currently does four therapies: occupational therapy, physical therapy, speech therapy, and ABA (applied behavior analysis). All have been critical to his development since genetics has no information on his duplication. He sees multiple specialists for care. Clark learned to walk a year ago. Clark has DME supplies for his tube, an adaptive chair, a Rifton chair for eating at home, and AFO's. Due to sensory needs he utilizes some extra supplies like chewies, headphones, a spinner and more.

Clark is not the only one in the family who relies on healthcare. His mother and brother both have multiple disorders and diagnoses. The ACA improved many of Tricare's policies and allowed more coverage on certain items. Many people don't see how difficult it is to work with Tricare when you have multiple referrals and specialists and you need to be enrolled in separate programs for coverage. Clark has Medicaid to help offset a lot of the struggles with Tricare. Medicaid helped get his equipment and AFO's. It also helps when Tricare is backlogged and referrals do not process accordingly.

Submitted by Clark’s mom, Cassandra.

A note from Little Lobbyists: It is a common misconception that insurance programs such as Tricare cover everything a child could need. However, as is clear from Clark’s story, Medicaid provides access to critical supplies, equipment, and services that Tricare does not.

 
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Will

Age 2, Illinois

Meet Will. Will is a super happy 2-year-old twin. He’s the "youngest," born just two minutes after his sister. Will has a smile that will blow you away, and he loves to flash it at anyone who will return with a grin. He adores music of all kinds, the "hot dog song" from Mickey Mouse is his favorite. He recently learned to walk and now he won't stay still!

Wil was diagnosed with a congenital heart defect called Hypoplastic Right Heart Syndrome before he was born, and shortly after birth he needed a heart transplant to survive. He was 9 days old when he was placed on the transplant list and three weeks old when he received the gift of his new heart, an incredible miracle that his family is forever grateful for.

Will also has a GJ tube, has global development delay, and see therapists weekly for feeding, speech, OT and PT. For the rest of his life he will need to take anti-rejection medications. Will’s mother, Sarah says: “Will blew past his lifetime cap within the first year of his life. With a literal lifetime of cardiac check-ups, heart biopsies, and expensive medications ahead of him, protections for pre-existing conditions like his and the lifetime cap are critical to his well-being financially and medically. There is absolutely no way that we, or Will in the future as an adult, could afford his medical needs were the protection of the #ACA to disappear.”

Submitted by Sarah, Will’s mother.

   

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Evie

Age 6, Ohio

Meet Evie. She’s energetic, expressive, funny, and fearless. She’s a dynamo gymnast, a natural horseback rider, and can break it down on the dance floor like no one else. She loves new friends, fashion, popcorn, parties, fruit snacks, playing with her dollhouse, helping her mom, giving hugs, and putting her big brother Jack in headlocks. Evie has advocated in her local Senator’s office in Cincinnati and visited all of her political representatives in D.C. Evie is tiny but mighty!

Evie has Down syndrome, sleep apnea, and strabismus and gets lots of sinus, ear, and eye infections due to her small airways. She’s had 7 surgeries so far, including: open-heart surgery, surgery on her airways, and ear tubes. She uses a CPAP, wears bifocals, takes medications, needs frequent sleep studies, and has had 4 sets of ear tubes.

Evie is in kindergarten in an inclusive public school classroom where she’s making friends and gaining skills to help her achieve independence. Her individualized education plan (IEP) makes sure she can access curriculum by providing the support and accommodations she needs, including: speech therapy, occupational therapy, visual therapy, physical therapy, reading intervention, and an aide at school.

Evie’s mom, Jen says: “Luckily we have good health insurance through an employer, but I worry about protections for pre-existing conditions. Without the ACA, we would likely hit our Lifetime cap very soon. Since both my children have disabilities (Evie’s brother has Autism), they’ll need Medicaid to live in their community when we’re gone. My kids are getting a great education in their public schools and I know that with support they can be gainfully employed, tax paying citizens. But, without Medicaid, my children may one day lose the independence we are working so hard to teach them, and they are working so hard to gain. Like most Americans, if we lost our insurance we would be bankrupt. We planned and saved before we had kids, but the financial costs of having disabilities are insurmountable.”

Submitted by Evie’s mom, Jen

   

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Danny

Age 6, Kansas

Meet Danny. Danny loves school, playing with friends, Lego club, and reading. He has the best smile around and loves to go shopping – mostly because he likes to chat up everyone in the store. While he’s still working on his verbal communication, he has a lot to say and an opinion about everything. He is the whole world to his family and works incredibly hard at everything he does. To know Danny is to love him.

Danny was born prematurely and has spastic, quadriplegic cerebral palsy, epilepsy, cortical vision impairment, and uses a g-tube for all of his food and nutrition. He is on many medications to treat seizures and GERD. He also follows a specialized ketogenic diet to treat his seizures. Danny needs total support at home and school, requiring 1:1 assistance for all activities of daily living and seizure monitoring.

At school Danny receives full-time 1:1 paraprofessional support, physical and occupational therapy, vision therapy, and assistive technology support. He needs adaptive equipment in the classroom and on the playground. Because of all of the supports, he attends a regular 1st grade class and is academically on grade level. Most of his therapies are provided within the classroom setting and he spends most of his day with his friends and classmates.

Danny requires adaptive positioning equipment and uses a wheelchair. Accessible accommodations mandated by the Americans with Disabilities Act like ramps, elevators, curb cuts, parking, and large bathrooms with changing tables, make it possible for him to hang out with friends, go to the movies, and navigate the world.

Danny’s mother Laura says: “Medical care is a daily activity in our life and we live in fear of losing protections for pre-existing conditions and the return of lifetime caps. Danny’s level of disability qualifies him for an institutional level of care and we choose to have his services in our home. Danny receives personal care after school and on weekends. This has allowed both of us to work and for Danny to receive the care he needs. If Medicaid were cut, it would significantly alter Danny’s life not only now, but in the future. Danny will depend on Medicaid to provide his care so that he may live a full and independent life. Without Medicaid supports, his health and life would be at risk.”

Submitted by Danny’s mom, Laura

   

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Emory

Age 2, Texas

Meet Emory. Emory loves music and likes to read books. Her diagnoses include chronic lung disease, oral aversion, retinopathy of prematurity, pulmonary artery hypertension. Emory has a tracheostomy and a g button (for nutrition and medicine). She needs breathing treatments every 4-6 hours, g tube feedings every 4 hours, and 24/7 medical care and supervision to ensure her g tube and trach stay in place.

Emory’s mother Elizabeth says: “Medicaid has paid for her medications, doctor visits, and private duty nursing. It provides our daughter with much-needed healthcare we couldn't afford without it.”

Submitted by Emory’s mom, Elizabeth   

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John

Wisconsin

Meet John (JD). JD enjoys music, animals, sports, and building with his dad. JD’s diagnoses include: Epilepsy, Intellectual Disability, Fetal Alcohol Spectrum Disorder, Severe Asthma, G-tube, Failure to Thrive. He's seen by a team of 6 specialists and a primary care doctor. JD takes medicine and uses inhalers 3x a day (sometimes more), is g-tube fed at night, and needs care and supervision 24/7 because of potential seizures, asthma attacks, and behavioral issues.

JD’s mother Brigit says:Healthcare means everything to our family! Our child is medically fragile and if his health fails, our world stops until he recovers. We want to care for our son at home, where he's loved. Medicaid helps us do this. Medicaid has ensured that our son gets the supports and services when they are medically necessary so he can stay healthy and at home.

Submitted by Johns’s mom, Brigit

   

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Angelica

Age 2, Texas

Meet Angelica. Angelica loves lights and sounds, music and having visitors. Her main diagnosis is semi lobar Holoprosencephaly, microcephaly with cleft lip and palate. She has a long list of secondary conditions attributed to those conditions. She is nonverbal and has not yet met many of the milestones of a healthy child her age. Angelica requires daily medications multiple times a day, therapy (speech, occupational and physical) and constant supervision and care from her mother or nurses.

Angelica’s mother says: “I was given the 1st part of Angelica’s diagnosis at 27th week of my pregnancy. Semi lobar Holoprosencephaly, with cleft lip. The neurologist and maternal fetal specialists told me that if she did not die in utero she would be stillborn, or die shortly after birth. Angelica defied the odds – only 1% of babies born with Holoprosencephaly live past 6 months.

Without access to affordable health care Angelica would very quickly regress. She would not be able to breathe, she would be in pain and would experience seizures, electrolyte imbalances, growth hormone deficiency, and eventually death. We’ve had more than a dozen hospital stays over the last year, several times in the ICU and NICU. One medication she takes daily is upwards of $20,000.00 a month. Her Medicaid waiver for medically fragile children covers all of this. Without my daughter’s health care coverage, we could not afford to properly care for Angelica.”

Submitted by Angelica’s mom, Mary

   

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Lorelei

Age 4, Ohio

Meet Lorelei. Lorelei loves preschool and dance class (she takes tap and ballet) and her favorite person is her big sister Adelaide. Lorelei has Down syndrome. She also had non immune fetal hydrops, duodenal atresia, hypothyroidism, perforated ear drums, and hearing loss. She has a pacemaker for third degree heart block, has had four hernia repairs, has tubes in both ears and uses hearing aids. She attends speech therapy 1-2 times per week. In winter of 2018 she was in the PICU twice – once for RSV and again two weeks later with pneumonia.

If the Affordable Care Act were repealed Lorelei’s mom, Kate says: “My daughter Lorelei and I are both at risk if we do not have protection for pre-existing conditions. Because our insurance allows us accessible and affordable medical care, my daughter, Lorelei and I are alive. I was diagnosed with renal cancer in 2016. Every test and procedure that has saved our life, reduced our pain and increased skills (ie. speech, hearing aids, etc.) could easily be denied if the ACA was repealed.”

Submitted by Kate, Lorelei’s mom


 
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Natalie

Age 5, California

Meet Natalie. Natalie loves swimming, drawing and cooking. She has Osteogenesis Imperfecta (brittle bones). Though there’s no cure for OI, people with the condition, like Natalie, can lead full and productive lives if they have access to quality health care. Natalie has had multiple surgeries to correct fractures and place titanium rods in her femurs to allow her to stand and walk. She also takes regular medications to improve her bone density and needs physical therapy several times a week to work on her strength and balance.

If the protections for people with pre-existing conditions and ban on lifetime caps on care in the Affordable Care Act are repealed, Natalie’s dad Joe says it would “result in de facto segregation by health status. Our daughter would lose her right to affordable care. Insurance companies would be allowed to put her in high risk pools with lesser benefits and unaffordable premiums.”

Submitted by Natalie’s dad, Joe

   

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Luke

Age 4, North Carolina

Meet Luke. Luke is a sweet, fun, loving 4-year-old boy who enjoys reading board books, hiking in his stroller, and swinging at the park. He also enjoys playing adaptive baseball with his friends!

Luke was born at 34 weeks after an emergency C-section. He was not breathing for 6 minutes, spent 63 days in the NICU, and has had 5 surgeries. Luke has cerebral palsy, and has difficulty with motor skills and verbal communication. He needs assistance to sit, stand, and walk. Luke is a kid that wants to play with other kids. He uses a walker and wheelchair to get around, so he needs accessible playgrounds and adaptive equipment. He loves to be independent and is working very hard in therapy (physical, occupational, music, horse, and speech) and has made a lot of progress!

Luke has a CAP-C Medicaid waiver which covers expenses not paid by his family’s primary health insurance, like: personal home aids, medical supplies, medications, and therapies.

Luke's mom, Saskia, says: “We want Luke to be happy, healthy, and as independent as possible. We found it very difficult to find child care for Luke before he was 3 years old because he has special needs. After he received the CAP-C Medicaid waiver, we were able to get the help he needs while we’re at work.

I am worried about losing coverage for Luke if insurance and Medicaid no longer cover pre-existing conditions or have an insurance cap amount ($1 million, for example). If Senate and Congress are truly pro-life they need to be pro-full life, not just pro birth!"

Submitted by Luke’s mom, Saskia

   

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Alice

Age 3, Michigan

Meet Alice. Alice loves to read, swim, dance, and hang out with her big sister. She just started preschool and is quite excited about it.

Alice has a congenital heart defect called Shone's Complex.  Alice needs a medicine called coumadin daily to protect her artificial heart valve from clotting, sildenafil 3x daily, blood draws 2x per week, and monthly visits to the cardiologist to check her heart function. When Alice was born, her family had health insurance purchased through the Affordable Care Act’s health care exchange on healthcare.gov. They currently have private health insurance through Alice’s mom’s employer.

Alice’s mother, Rachel, tells her story: “Our beautiful baby girl was born in Detroit, Michigan on July 8, 2015. On July 9th, one of the most frightening days of our lives, Alice had to be transported via ambulance to the Children's Hospital NICU to prepare for emergency heart surgery. Three lengthy hospital stays and as many open heart surgeries later, our beautiful daughter is a healthy and thriving 3 year old with a St. Jude mechanical mitral valve. She will need to take coumadin and sildenafil her whole life, and avoid contact sports. Her hospital stays and medications cost well over a million dollars - closer to two million. Without the ACA, our family would be bankrupt, worrying about how to pay for her life saving medications. I cannot express how stressful and gut-wrenching a time this was for my family. I am thankful every day for the ACA.”

Submitted by Alice’s mom, Rachel

   

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Teddy

Age 7, Washington DC

Meet Teddy. Teddy likes to spend time in nature with his family and friends. He loves music, playing the piano is his favorite thing to do. He also likes to trace letters and count numbers.

Teddy has chronic lung disease, chronic respiratory insufficiency, hypotonia, neuromuscular weakness, syncope, aspiration, severe developmental delay, unknown genetic disorder and growth hormone deficiency. Because of his underdeveloped lungs, Teddy has a tracheostomy. He needs oxygen support and receives all his fluids and medications through his feeding tube. He is currently non-verbal and uses a walker and wheelchair to get around, but he is working very hard in therapy (physical, occupational, speech and feeding) and has made a lot of progress.

Teddy has a Medicaid waiver which covers expenses not paid by his family’s primary health insurance, like: home health care, medical equipment, medical supplies, medications and therapies.

Teddy’s mom says: “We hope to see our child with severe life-limiting disability thrive and grow like any other child, without fearing an unbearable financial burden our family can’t afford. If we can’t support him, can’t help him live because of the cost of medical care he needs, he could die. My child has a right to life his life.”

Submitted by Teddy’s Mom, Sanghee

   

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Henry

Age 1, Georgia

Meet Henry. Henry and his twin brother love dancing to Baby Shark and playing with their older brother, Jack (4). They also like to take turns comforting and teasing each other, as twins do. Their Mom and dad are both teachers who think their boys are miracles.

Henry is a MoDi (Monochorionic-Diamniotic) twin who survived acute twin to twin transfusion syndrome at birth. As the donor twin, he suffered permanent kidney injury and a brain injury. He has hypotonia, microcephaly, hypertension, hyperkalemia, anemia and feeding issues.

Henry has received weekly feeding and physical therapies since discharge from the NICU at 8 weeks old. Currently he requires special renal formula, medication to remove potassium from his foods, medication to stabilize his blood pressure, and medication for bone health. He also has a feeding pump and NG feeding supplies to be used as needed (being able to eat by mouth is a big improvement for his quality of life and has added to some sense of normalcy for our family). He is not currently on dialysis, but will likely need it in the future as his diminished kidney function ceases to meet his bodily demands. He will require multiple kidney transplants throughout his life.

Henry’s twin brother Ryan had lung issues and was released from NICU (2 weeks). He currently has sensory issues and is starting speech therapy for communication concerns. Henry is working hard and making great progress but his state of Georgia has denied him access to a Medicaid waiver because he does not meet their minimum requirement for therapies per week, and (despite the threat of kidney failure) he does not currently need dialysis. As teachers, Henry’s parent’s only coverage option is the Georgia State Health Benefit Plan.

His mother Jennifer says, “Though we were a high risk pregnancy, both babies were healthy/without complications as we headed into our induction. We had no idea anything was wrong until they were born. Neither did the doctors. The next several months were fraught with fear and anxiety. We didn't know what would happen to our babies, nevermind the astronomical medical bills we were accruing daily (despite insurance).

Henry was born with a pre-existing condition. He did nothing wrong. We did nothing wrong. Regardless, he will live with this threat to his health every day for the rest of his life. I live in fear that the protections we rely on to access care will be stripped and no one will cover us (or they will price us out of coverage). I also fear that, should a complication with Ryan manifest, they could also deem it pre-existing due to his birth history.

We will rely on Medicaid as Henry approaches/undergoes a kidney transplant. Until then, we do not qualify for supplemental coverage.”

Submitted by Henry’s Mom, Jennifer

   

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Nelebel

Age 12, California

Meet Nelebel. Nellie loves music and dancing! She can’t stay still when she hears it and has perfect rhythm. She’s very social, she loves to go to school, collect beautiful bags, and use her iPad – which is her window to communicating with the world. Nellie also loves swimming, outings, helping with community projects, and her dogs. 

Though she was not diagnosed until she was 6 1/2, Nellie was born with an extremely rare and complex syndrome called 4q21 Microdeletion Syndrome. She has severe global hypotonia and is cyclically and chronically ill. According to available statistics, Nellie is considered to be in the “lucky 30%” of children who survive 4q21 Microdeletion Syndrome past the age of 3.

Nellie has Medi-Cal with a Community Health Group HMO. Her parents say her rare syndrome makes it harder for her to qualify for support, like a waiver, but that she was able to qualify for CCS for extensive dental surgery. Her mother says, “She is one of the strongest people I know! Meeting other families was crucial in finding out about Nellie’s syndrome and also finding ways to help her. Her doctors are learning from us, which is very difficult when navigating the medical system and getting insurance to cover her diverse needs quickly. She faced many instances, and still does today, where that delay becomes a life or death decision.”

Nellie is included in a Baccalaureate School, where all students have access to the curriculum. She needs help with everything to access education (she has a 96 page I.E.P.). She uses an iPad at school for communication. Without her IEP, communication device, and the wonderful, supportive people in her world “village”, she would be left at home. Being the middle child of 5 siblings she would still have a pretty busy and exuberant life, but she really wants her own independent achievements to be proud of. Being included at school gives Nellie a good foundation for achieving independence in the world.

Nellie was able to walk independently for the first time at age 5, after intensive physical therapy while she was still recovering from anesthesia after ear-tubes were inserted and hidden fluid drained (she had no central balance before that procedure). For outings Nellie still uses a wheelchair at times, so she needs wheelchair access, as well as accomodations for her communication, sensory, and processing needs. As she gets older, her family notices how inaccessible many places are, and they prefer to spend their time and money in places that help enable easy access.

Nellie’s mother Serena says, “Any restriction, delay, or cut to medical access can be life-limiting at any time for Nellie. We have already experienced developmental and mobility barriers in the care we have received due to delays, circuitous systems, and poor-quality supplies like diapers that won’t stay up, foot orthotics finally covered at age 8, but no shoes go over them, etc. The services need to follow the patient. When Nellie was undiagnosed, her severe respiratory infections were treated like a typical infant’s, but it is one of the main causes of death with the “unlucky 70%” with 4q21 microdeletions. Diagnosis is the first line of defense for intervention when an infant is suspected of having a possible genetic syndrome, and this is improving as testing becomes cheaper and more widely available.”

Submitted by Nelebel’s Mom, Serena

   

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Nikolas

Age 5, Colorado

Meet Nikolas. Nikolas loves watching Disney Jr, singing, dancing, playing with cars and trucks, going to the park, and jumping in bounce houses. Nikolas has Down syndrome, mild sleep apnea, low muscle tone, aspiration, vision and hearing difficulties, is nonverbal, and has developmental delays. He needs glasses, hearing aids and ear tubes, leg braces, therapy (occupational, physical, speech & ABA), annual sleep and swallow studies, ENT follow ups, cardiac check-ups, yearly complete blood count tests to monitor for thyroid issues, iron deficiency, and leukemia. 

Nik's family has private insurance, but that doesn't cover everything he needs, including therapy, important medical equipment, and nursing. Fortunately, Nik has Medicaid to pay the 75% "out of pocket" fees that insurance doesn't cover but which would put Nik's family deeply into debt. 

Nik's state of Colorado has a caregiver CNA (certified nurse aide) program, which his family takes advantage of to help provide for Nik's care while supporting their family finances. However, If proposed cuts to Medicaid and repeal of the Affordable Care Act goes through, Nik's mother is worried she would lose her job as Nik's parent/caregiver certified nursing assistant as well as her son's vital health coverage – a double-blow to their family.

Nik's mother Melissa says: "This not only affects us but every child in need of Medicaid with or without other insurance. This affects their whole family. This will also affect my adult daughter who is also disabled due to a birth defect called spina bifida and has Medicaid. She's unable to get a job outside of my father’s home and cannot afford self-employment insurance. Medicaid is her only choice."

Submitted by Nikolas' Mom, Melissa

   

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Sarah

Age 5, Pennsylvania

Meet Sarah. Sarah loves to play with her baby dolls for hours. She also really enjoys play doh, and reading with Mommy. Her favorite book is "Love You Forever" and we read it every night before bed. Sarah started Kindergarten this year and she loves getting to know her classmates, telling them about her "tubies" (feeding tubes) and showing off her tummy.

Sarah has many medical conditions, including: Renal Tubular Acidosis, Ketotic Hypoglycemia, Hypotonia, Dysautonomia, POTS, Gastroparesis, Gut Dysmotility, apraxia of speech, an eye muscle disorder, chronic fatigue syndrome, and developmental delays.

Sarah has had seven surgeries in five years, requires two feeding pumps 21 hours a day, and requires help in all aspects of life. She is a complex case that even some of the top doctors in the country can't piece together. She sees 11 specialists multiple times a year and requires 16 hours of nursing every day.

At school, Sarah receives nursing care, a 1:1 classroom aide, physical therapy, occupational therapy, speech therapy, and life skills instruction while at school. Her IEP gives us the ability to keep essential medical necessities (like headphones and oral stimulation therapy items) at school in a safe place and allows her to go to all of her outside appointments. Without the accommodations at school, Sarah would fall further behind academically and could potentially injure herself or become ill very quickly.

Sarah uses an adaptive stroller because her legs give out when she has to walk long distances. She needs a protective helmet to prevent head injuries and sleeps in a special bed to protect her from falling or pulling out her feeding tubes.

Without the protection of the Affordable Care Act, Sarah would very likely not be alive today, and our family would have crumbled under the weight of the financial burden. But, thanks to the ACA, Sarah is able to live at home, go to school and have a fantastic quality of life.

Submitted by Sarah's Mom, Lisa

   

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Cary Lynn & Marvin

Ages 6 & 11, Virginia

Meet Cary Lynn & Marvin, superhero siblings through adoption. Cary Lynn is a sassy, spunky, rock star. She loves people, wearing big hair bows, and is a daddy's girl. Marvin is funny, smart, and kind and has a very dry sense of humor. Both children have multiple medical conditions. Cary Lynn's include Mitochondrial Disease, Cerebral Palsy, and Diabetes insipidus. Marvin has Autism, KMT2E genetic mutation, Shaken Baby Syndrome.

Both children are on waiting lists for Medicaid. Their mother, Amy, loves being their super mom but has struggled to make sure her kids get all the support they need. She says, "Even though by adopting these children I have saved Virginia millions of dollars they are still treated like second class citizens. My son attends a private school at my expense. Our county refuses to provide FAPE (free and appropriate public education) for either child and neither get their needs met."

Submitted by Cary Lynn & Marvin's Mom, Amy

   

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Wyatt

Age 6, Illinois

Meet Wyatt. Wyatt loves animals and his brother Hank is his best friend. He loves to build complex race car and train tracks for his Hot Wheels and Thomas trains. When he's not building; he's riding his bike, chasing barn cats, and bossing his younger brother around. When he's not reading about trains, he loves Pete the Cat books and stories about dogs. He's very curious and always wants to know "Why?" or "How?". When Wyatt grows up, he wants to be a racecar driver, when not driving a train or the combine for his PawPaw.

Wyatt has 22q11.2 Deletion Syndrome. He was born with Tetrology of Fallot (congenital heart defect), bilateral club foot, a missing thymus, hypoparathyroidism that causes low calcium, and GERD that prevented him from gaining weight and required a g-tube. He has also been diagnosed with ADHD and anxiety in the last year. He is currently followed by an immunologist, endocrinologist, developmental pediatrician, cardiologist, orthopaedic surgeon, geneticist, and dietician. He has graduated to "as needed" with his gastroenterologist and urologist.

Wyatt receives occupational therapy, physical therapy, and speech therapy through the school. Since our insurance limits the number of therapy visits we can receive his main therapies are through the school. His behavior plan and 1:1 aide have made it possible for him to attend our local elementary school.If we did not have the protections of IDEA he would not have been given access to a pre-school program outside of his self-contained special education classroom. IDEA protections gave us the ability to fight for placement in a general education preschool classroom and prepare him for kindergarten. IDEA protections gave him the opportunity to start kindergarten with his peers and participate in the classroom and activities with his friends and family. Instead of being sent to a different school with "more resources" IDEA guarantees those resources are made available to him at the school one block from our house. IDEA allows our family to be an active part of our community.

When Wyatt's heart defect was found at a pre-natal check-up we were advised that insurance companies would fight to deny him coverage because it would be a pre-existing condition. It was the early days of the ACA and we were told time and again how fortunate we were that we could no longer be denied coverage. Wyatt would have hit his lifetime cap before he left NICU, before his first repair surgery. Again and again we were told how fortunate we were that the lifetime cap had been lifted. Losing these protections would mean we could not afford his future heart surgeries, his weekly infusions and daily medications, private therapies, and orthotics. Cuts to Medicaid in Missouri have already affected wait times and access to specialists. Without the protections of the ACA, Wyatt would not be alive today. The ACA is nothing short of the difference between life and death for our family.

Submitted by Wyatt's Mom, Mary

   

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Jonathan

Age 2, Oklahoma

Meet Jonathan. Jonathan has been fighting a rare disease called langerhans cell histiocytosis (LCH) since he was one month old. He ended up with high risk LCH in his bones, liver and spleen. The chemo protocol is often not effective.

Submitted by Jonathan's Mom, Rebecca

   

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Jack

Age 13, Georgia

Meet Jack. Jack loves to swim, play on his iPad, tease his friends and watch football with his buddies. Jack also has cerebral palsy and other developmental disabilities.

While Jack's family has private insurance, their plans have had limits and high deductibles plans that made his care unaffordable. Fortunately, Jack has been on the Katie Beckett Medicaid waiver since he was 2 years old. Jack's Medicaid coverage is crucial - it covers medical and pharmaceutical expenses as well as therapy.

Jack's mom, Christine says: "The therapies that he's received since he was a baby have been crucial in developing the confident middle schooler he is today. Without them he may never have learned to walk, communicate or meet basic self-care needs, and his future would be limited if he was unable to continue to receive them.

My husband and I are raising Jack with the expectation of working, paying taxes, and living in a semi-independent setting. We're not only concerned about losing his current Medicaid services, but that he could also lose future opportunities for ongoing medical coverage, job support and semi-independent living assistance. Jack’s future would be dismal if it is in an institution versus an inclusive community setting."

Submitted by Jack's Mom, Christine

   

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Lucy

Age 5, Maryland

Meet Lucy. Lucy is beautiful, sweet, and a champion snuggler. She has a silly sense of humor, and loves to play games with her little sister. Her favorite things are being read to (especially by Daddy) and listening/dancing to music.

Lucy was diagnosed at 2 months old with Aicardi syndrome, an extremely rare genetic mutation which causes intractable seizures, and Lennox Gastaut syndrome. She has complete agenesis of the corpus callosim, retinal lacunae, and numerous other brain malformations. She is nonverbal and nonambulatory. She relies on four anti-epileptic medications, which do not keep her seizures at bay. She needs a wheelchair to get around, and is beginning to work with an eye-gaze communication device. She has an entire team of people who keep her alive: pediatrician, neurologist, orthopedist, opthamologist, and physical, occupational, and speech therapists.

Lucy LOVES school. There, she has the classroom experience, enhanced by a whole battery of therapies: speech therapy, OT, PT, music therapy, art therapy. Her teachers work with us to ensure that Lucy has every opportunity to grow and thrive and live a full and deeply meaningful life. Without the protections of Section 504, IDEA, I have no doubt that Lucy wouldn’t even be able to attend school. Her needs are too great.

Lucy can not walk, stand, or even sit up. She has to go everywhere in a wheelchair. She is not potty trained. Without wheelchair ramps and handicapped accessible spaces, Lucy would not be able to leave the house. As it is, there are no large child/adult changing tables in any of the public spaces around us, so we have to change her in the grass or in the back of our van.

Lucy’s life literally depends on quality medical care. Without her team of experts, her quality of life would suffer. Without access to affordable care, we would not be able to afford everything Lucy needs to stay alive. One of her previous medications, for example, cost $35,000 PER VIAL, or approximately $100,000 a month!

If protections for preexisting conditions were lost, I would never be able to leave my job, and G-d help me if I lost it for any reason. If lifetime caps were reinstated, Lucy would already have exceeded hers. It would be a death sentence.

Submitted by Lucy's Mom, Katie

   

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Miranda

Age 16, North Dakota

Meet Miranda. Miranda is an "old soul" — she loves listening to old radio broadcasts, watching old westerns and comedy skits. When at home relaxing she likes to watch TV and have a good laugh. Miranda also loves hanging out with her younger sister Marguerite, especially while cheering for her favorite school sports (football and basketball). Miranda's also an animal lover, taking every chance she can to give them a cuddle. Miranda lights up the room with her smile and easily makes people happy by just being herself. Her pure, honest emotion is a gift and she's not afraid to share it.

Miranda has several diagnoses, including: CVID (combined variable immunodeficiency), focal epilepsy, femoral anteversion, cortical blindness, Autism, mitochondrial disease, intellectual disability, hypotonia, early-onset menopause, advanced bone age, bowel problems/constant constipation, nerve damage.

Everyday, Miranda takes 18 medications and supplements; including life-saving anti-convulsants for epilepsy. She needs weekly injections of IVIG to support her immune system, without which she would'nt be alive (she couldn't even fight off a common cold!). Recently, she had the second of four planned surgeries to correct leg and knee issues.

Miranda is working on walking, but due to nerve damage, she currently needs a wheelchair. Ramps and automatic doors mandated by the Americans with Disabilities Act are vital - you can’t push a wheelchair up stairs without a assistance and/or a very bumpy ride (not cool after surgery!).

Miranda loves going to school to be with friends and classmates. Thanks to the Individuals with Disabilities Education Act (IDEA), Miranda has the support she needs (including a 1-1 aide) to be fully included in her school community, so she doesn't experience the feeling of isolation many individuals with disabilities experience. At school she receives speech and occupational therapy, gets job coaching, and learns the skills she will need to be successful in the future. 

Access to health care is vital for Miranda, without the ACA her quality of life would be poor. It may sound dramatic, but it is 100% true. If the safeguards within the ACA were to be removed, like the ban on lifetime caps on care, our family would be on a tightrope walk  – it would only be 6 months before Miranda was kicked off our insurance.

Submitted by Miranda's Mom, Heather

   

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Elise

Age 2, Texas

Meet Elise. Elise is a happy girl, who loves listening and dancing to music, reading books, and playing with her older brother and sister. She enjoys being outside, swinging, swimming, and going on walks. Her smile is infectious, and she will melt your heart with her kisses and hugs, which she bestows often to her family, friends and therapists. 

I remember when Elise's pediatrician called her "perfect" after a healthy pregnancy and uncomplicated delivery. But when she was just 5 weeks old, Elise was nearly killed when a distracted driver ran a red light and t-boned our family's minivan. 

She suffered a skull fracture, c-spine injury, and severe traumatic brain injury, which caused epilepsy, microcephaly, hypotonia, hemiparesis, cortical visual impairment, esotropia, feeding difficulties necessitating a g-tube and global delays.

After the car accident, Elise spent almost a month on life support in the ICU. Without health insurance, the more than $600,000 bill for that hospitalization alone would have crippled us. 

The paramedics who rescued her didn't think she'd survive. The neurosurgeon who treated her didn't think she'd learn to hold up her head. Now at 2 years old, Elise continues to surprise us with her tenacious spirit. She can sit, recently learned to roll over, and is starting to imitate sounds and take steps in her new gait trainer.

Even though our family has private insurance, it covers a fraction of her nursing and therapy needs, medical equipment (such as her wheelchair, stander, gait trainer or bath seat) and monthly feeding supplies, without which she cannot eat. We are grateful she qualified for a Medicaid waiver program. However since Texas privatized Medicaid, these benefits have become less certain.


Without the ACA's protection for people with pre-existing conditions, it's unlikely Elise would qualify. And if lifetime camps on care were reinstated, Elise would be well on her way to the maximum - at only 2 years old.

Access to quality healthcare for all would mean I could stop worrying about my daughter's future if the ACA or Medicaid were cut and instead focus on her recovery.

Submitted by Elise's Mom, Alison

   

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Teddy

Age 2, Kentucky

Meet Teddy. Teddy loves music, being outdoors, and reading books – front to back!

Teddy was born at 29 weeks with VACTERL association, a group of birth defects that are often present in a single child. Some conditions were minor, but he had Esophageal Atresia (esophagus was not connected), and Sacral Agenesis (missing tailbone). He spent his first 7 months in hospitals in KY and Boston, and his EA is now repaired.

Teddy currently needs several weekly therapies to help with sensory and eating issues, and specialized equipment for mobility. He eats most of his calories through an abdominal feeding tube, but slowly is learning to eat by mouth. 

Access to affordable health care is vital to Teddy's quality of life. The home-based community waiver he has helps with daycare for medically sensitive children, expenses for surgery and therapy, and many other important benefits. Even with our quality health coverage through our employers, we would be unable to provide the care Teddy needs to thrive without Medicaid. 

Submitted by Teddy's Dad, Jason

   

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Kadan

Age 2, Pennsylvania

Meet Kadan. Kadan loves to be outside and play at the park. He also has many medical issues involving his heart, lungs, eyes, ears, and brain, including: patent ductus arteriosus, bronchopulmonary dysplasiachronic liver disease, retinopathy of prematurity, intraventricular hemorrhage, chronic otitis media, 

Kadan's mom, Desirae says that for her, access to affordable, quality health care means: "Being able, as a single mother, to get my son's daily prescriptions without having to worry if I'm also going to be able to feed him. Medicaid pays almost $3,000 monthly for my son's medical necessities, including oxygen tanks, concentrators, steroids, etc. Without it, I wouldn't be able to afford the meds he requires." 

Submitted by Kadan's mom, Desirae

   

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Elliot

Age 2, Maryland

Meet Elliot. Elliott is the most amazing kid – always happy and loves life. He likes to be outside, go for walks, play with his big sister, and help cook dinner by tasting everything. He makes his mom, dad, and sister laugh every day with his shenanigans.

Elliot's list of medical issues is long: esophageal atresia, bowel rupture, tracheomalacia, tracheal diverticulum, recurrent fistula, congenital esophageal stricture, and cerebral palsy. He's had 6 major surgeries and been hospitalized 13 times – a total of 8 months of his young life! He's had innumerable blood transfusions, dilations, spinal taps, CT scans, MRIs, PICC lines, and more. He sees 11 different specialists, plus his regular pediatrician, on a regular basis, and requires immediate intervention when he is sick. 

After numerous surgeries to correct the physical malformations, his greatest current need is therapy: physical, occupational, and speech, to help him be as active as possible. We work with the county early intervention program and private therapists 3-5 times a week. Elliott works hard at therapy, and is making amazing progress – he's learning to sit up and is starting to talk! Next step: walking!

Elliott's doctors are optimistic that will eventually learn to walk and talk, so we push him every day to improve, and he is improving. He loves to eat, and is finally starting to understand how much cooler it is to be able to sit on his own than be propped up all the time! He communicates very well, can answer questions, and even make choices between two options. He shows progress every week. All of this is thanks to medical interventions, therapy, grit, and determination.

However, with all of Elliott's medical needs, we'd be lost without medical insurance. The cost of all of his medical care has well-exceeded $3 million. We are currently applying for a Medicaid waiver, and hope to be approved for that soon, but we know there is a long waiting list in our state.

Submitted by Elliott's mom, Caroline

   

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Claire

Age 12, Washington D.C.

Meet Claire. Claire loves ice cream, fashion magazines, shoes, anything Disney, swimming, and laughing with her siblings. She has an incredible laugh. She loves books and has earned the nickname "the little Professor" at school.

Claire has a rare genetic disorder, microduplication of Chromosome 2p. Although there are only two known cases in the entire world, many of the resultant medical conditions are more common. Claire has a number of diagnoses, including: autism, asthma, epilepsy, hypotonia, and intellectual disability. She is completely reliant on others for all of her needs and care.

Claire was born in 2006, before the ACA was law. We constantly worried that Claire would reach her caps on care or that if my husband were to lose his job Claire would be uninsurable due to the multiple pre-existing conditions with which she was born. Before the ACA, we had to make all of professional and life decisions based on ensuring Claire's access to health insurance. 

Claire depends on Medicaid to cover significant costs necessary for her care that are not covered by private insurance. These include home health care necessary to provide both personal care to keep her safe within the home and nursing care, the ABA therapy that has opened up a new world for her, and some durable medical equipment that is not covered by private insurance but that allows her to be a part of her community and live at home. Medicaid even covered the cost of a hearing aid that private insurance denied. Medicaid also covers some of her educational costs, including school-based therapies.

Claire attends a school for children with complex medical needs and multiple and severe disabilities. She receives multiple therapies at school as well as special education services. Some of the cost of her education is covered by Medicaid. She has a 1:1 aide at school.

Claire uses a wheelchair and relies on ADA protections to access the community. While we appreciate the accommodations that do exist, we see everyday that more needs to be done. Where we live in Washington, DC new playgrounds and schools are being built with budgets in the millions of dollars that do not meet even the minimum standards of the ADA. This makes it difficult for Claire to fully integrate into the community and the lives of her siblings.

Submitted by Claire's mom, Jamie

   

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Ayla

Age 5, Massachusetts

Meet Ayla. Ayla is a strong, happy, and determined little girl whose smile just melts your heart. She adores watching her twin sister Sierra, playing with her dogs Gus and Penny, and going to school everyday to learn and work hard with her friends, teachers, and therapists. She loves exploring any kind of sensory play, handling instruments, and being read to. Music is what makes her happiest and she shines the brightest when her favorite song, "This Little Light of Mine", is sung. She also loves getting scruffy-beard-tickles from her Daddy and Gampy. Just like glitter has this incredible ability to stick to everything it touches, Ayla has a lasting impact on those who get to know her.

Ayla was diagnosed with Townes-Brocks syndrome one month after birth, which caused her to have a heart defect, cleft palate, critical airway, Pierre-Robin sequence (small jaw), kidney and other physical abnormalities, low vision, hearing loss, hypotonia, and global development delays.

Ayla has had over 300 medical appointments, 25+ hospitalizations, 5 surgeries, and is currently followed by 16 specialists. She needs a minimum of 18 medications daily administered by mom and dad or a continuous skilled nurse (when we have coverage). She is on a specialized formula and needs to be fed through a feeding tube.

Her Durable Medical Equipment (DME) needs include, but aren't limited to: eyeglasses, hearing aides, ankle foot orthotics, stander, hip brace, gait-trainer, high/low chair, bath chair, nebulizer machine, suction machine and respiratory supplies, feeding pump and enteral supplies, bed pads, diapers, oximeter, and oxygen.

We have primary insurance (Blue Cross Blue Shield of MA) and MassHealth (Medicaid) is our secondary insurance through the Kaileigh Mulligan Program, which is a Medicaid Waiver. The Kaileigh Mulligan Program provides MassHealth services and benefits to certain children with severe special needs who are over the income standards for MassHealth eligibility and require the same level of ongoing nursing and medical needs as a child living in a pediatric nursing home or hospital.

Access to affordable, quality health care is our lifeboat. It keeps our family afloat in very challenging circumstances. Ayla gets the care she needs while our entire family can function with some level of normalcy.

Although we have private insurance, our secondary (Medicaid) is what pays for most of Ayla’s life-saving medical equipment, specialized formula, certain medications, and all 64 hours of continuous skilled nursing at home, which allows her to go to school everyday, receive important therapies, and for us to sleep, work, clean, go food shopping, and be there for our other daughter, who needs us just the same.

As her mother, it's my duty and responsibility to protect her and ensure she has what she needs to be safe, healthy, and happy so she can reach her full potential.

Cuts to Medicaid would put Ayla's life in jeopardy and fracture our family and the life we know today.

Submitted by Ayla's mom, Angela

   

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Anna

Age 5, Virginia

Meet Anna.  She is a typical 5 year old in many ways. She loves to play with her brothers. She loves Play-Doh and to play with her dolls. She is very into princesses right now. Anna loves to sing along to songs from Disney movies.

Anna’s medical diagnoses are cerebral palsy, tracheal bronchial malacia, subglottic stenosis, chronic lung disease, metabolic bone disease, allergies, eczema, and global developmental delays. She has a tracheostomy to breathe and uses a gastric tube to be fed. Anna needs oxygen at home intermittently for when she gets sick. Anna and her twin brother were born at 25 weeks in Arkansas. We became their foster parents shortly after birth. The prognosis all along was very grim for Anna. Several times a DNR was signed for her while she was still a foster child. After her second birthday we were fortunate and able to adopt her and her brother. In 2014 Anna developed a bone condition that caused over 30 bone breaks in 18 months. Due to this new condition the military stepped in to have my husband move so that she could be seen by Walter Reed in Maryland. In May 2015 Anna and I were flown by medical flight to Bethesda.

Anna’s current medical needs includes several machines to maintain her life here in the home. Anna is wheelchair bound at times. She also needs a medical bed to keep her safe while she is asleep. Anna attends 6 different therapies a week and has 3-6 appointments with specialist a month. We are currently taking her to Cincinnati Children’s Hospital for some of her more specialized care.

My husband has spent the last 22 years in the US military. Being military has afforded us very good health coverage but it does have some flaws. In order for Anna to be seen in Cincinnati we have to have a copay. Her cap ($1,000) was met 4 weeks after the plan started. Anna also needs a specific machine that the military health system deems experimental. This machine costs around $15,000. Medicaid has picked this cost up for us. Without this machine Anna spends 75% of her life in a hospital.

Once my husband retires from the military we will be responsible for a much larger copay. In Virginia this copay should be paid for by Medicaid. If this bill goes through, we could lose Medicaid. This would be devastating for our family. We could be one illness away from being bankrupt. The lifetime caps also affect us. Anna spent over 100 days in the hospital in 2015. Her medical bills were well over $1,000,000 for that visit alone. The clause about pre-existing conditions also applies, and applies to multiple members of our family.

Medicaid also pays for her nurse to attend school with her. Without a nurse Anna cannot attend school. She has came so far; she deserves to see how far she can go.

We know the ACA isn’t perfect but it seems more effective to fix what we have rather than recreate the wheel.

Anna  has fought so hard to be here. She was once considered to be in a vegetative state, but look at her now and she is head of her class. Spend five minutes with her and you will see how truly amazing she is.

You can read more about Anna's story here: www.speaknowforkids.org/annalyse_s_story

Submitted by Anna’s mother, Angie

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Melanie

Age 5, Arizona

Meet Melanie. She’s five years old and loves swimming, playing catch, and jumping on her trampoline.

Melanie has a long list of medical diagnosis which includes Trisomy 21, Xp 22.33 deletion, Complete AV Canal Defect, sensorineural Deafness, and many more.

Melanie’s biggest medical needs currently revolve around the diagnosis of Xp 22.33 deletion and the way it presents as Glycogen Storage Disease. As her parents we battle daily to keep her blood sugar steady via G-tube feeds and getting her to grow. At 4.5 she has barely hit 30 pounds and is tiny.

The second largest issue revolves around her being Deaf. Accessing medical care for her cochlear implant has been difficult given her co-morbid diagnosis of Trisomy 21.

Access to affordable healthcare means the world to us. If this bill passes, our daughter’s Medicaid benefits will likely be cut and the stark reality of a cap on benefits could not only crush us financially but there is a very real possibility it could put her life in danger.

Medicaid paid for Melanie’s open heart surgery which exceeded 1 million dollars. If she had not had access to Medicaid we would have been required to pay a deposit of 1/10 of the estimated cost to the hospital prior to them performing her surgery at 8 weeks old.

How would the changes in the proposed healthcare bill affect Melanie? Once her dad retires, Melanie will likely rely heavily on Medicaid to offset the large costs of medical care. Currently Medicaid pays all of our co-pays and for items Tricare refuses to cover such as thickener for formula that is required to take liquid by mouth safely.

Melanie is only 1 of the 4 children we have in our home with all 4 having varying degrees of special needs and all 4 qualifying for Medicaid based on those needs.

Submitted by Austin, Melanie’s mother

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Pierce

Age 4, Maryland

Meet Pierce. Pierce is four years old. He loves playing with his light up train and going to the aquarium.

Pierce was born with Moebius Syndrome, a rare craniofacial/neurological disorder that manifests itself primarily in facial paralysis. Like many people with Moebius Syndrome, Pierce was born with a small chin (micrognathia) and was diagnosed with Pierre Robin sequence.  Pierce was born with an internal cleft palate that was repaired surgically when he was 13 months old.   Pierce has been diagnosed with Cortical Visual Impairment, a visual dysfunction resulting from injury to visual centers of the brain. Pierce is also deaf and has global hypotonia and developmental delays.  He has been diagnosed as having myoclonic seizures.

Pierce has a tracheostomy (placed at 6 weeks old) and requires BiPAP (Bilevel Positive Airway Pressure) delivered through a ventilator when he sleeps.  Safe monitoring of Pierce’s tracheostomy requires 24 hour alert and awake caregiving to prevent suffocation due to obstruction or as a result of seizures.  Pierce receives all his nutrition through a feeding tube (placed at 3 weeks old).  We monitor Pierce’s oxygen 24 hours a day with a pulse oximeter.  Pierce requires nebulized medicine 2-4 times daily to assist his pulmonary functions and prevent pneumonia.  When Pierce is sick he requires oxygen.  Pierce has been hospitalized at least five times during his three short years for illness, (in addition to the 66 days he spent in the Neonatal Intensive Care Unit) each stay lasting an average of 1-2 weeks and most stays are in the Pediatric Intensive Care Unit (PICU).  Pierce has also had a number of surgeries and he is regularly monitored by gastroenterology, pulmonary, neurology, otorhinolaryngology (ENT), audiology, and genetics as well as his regular pediatrician.

Affordable quality healthcare means everything to our family.  Without it, we would face crippling medical bills that would most surely impact our ability to keep our child healthy and safe.

Pierce is on the Model Waiver funded by Maryland Medicaid.  Without Medicaid, one of us (Pierce’s parents) would have had to quit our jobs because Pierce’s tracheostomy requires 24 hour awake and alert caregiving.  Because no person can maintain awake and alert caregiving 24 hours per day, we would have lived in fear of catastrophe if one of us fell asleep while caring for Pierce.  Because of Medicaid, both of us have been able to keep our jobs and we know Pierce is safe because we have nursing care to monitor Pierce when we are sleeping and at work.

Cuts to Medicaid would have a dramatic impact on our family.  We have home nursing care for Pierce to cover only those hours that we are working and sleeping.  If Medicaid no longer covers those hours, one of us may need to quit our job and we will live in fear that our child will die if we fall asleep while watching him overnight.  Pierce’s medical bills crested $1 million during the first few months of his life; his medical care continues in the millions.  Lifetime caps on medical insurance coverage would financially destroy our family.  If the proposed healthcare bill handicaps individuals with pre-existing conditions, our son would face even more challenges and a loss of independence as an adult.

My husband and I have good jobs and good private insurance.  I have a professional degree and work as a lawyer.  My husband works in management at one of the country’s largest property management companies.  We own our home, pay our taxes, contribute to economy as consumers, and generally work to be responsible citizens.  We planned for years to achieve our professional and personal goals.  What we did not plan for and could not have prevented was our son’s medical condition.  We did not plan to spend months in the hospital watching our baby fight for his life.  We did not plan to face the choice of giving our son a tracheostomy or leaving him in a nursing facility to prevent his death.  We did not plan the millions of dollars of surgeries, nursing care, tests, ambulance rides, hospital stays and medical equipment that he needs to stay alive and healthy.  Everyone needs affordable health care and the option to enroll in Medicaid or a Medicaid waiver because as parents and as human beings we simply cannot plan for good health.  Sometimes, the smallest, most innocent among us are born with the most fragile bodies. America should support a healthcare system that doesn’t require bankruptcy to deal with unplanned health crises.

Submitted by Pierce’s mother

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Timmy

Age 6, Maryland

Meet Timmy. Timmy is a newly minted kindergarten graduate who loves robots and pirates, plays on a local soccer team, and dreams of growing up to become a police officer, firefighter, “ambulance man,” garbage collector, or robot repairman. He is exuberant, hilarious, creative, and one of the most resilient children you will ever meet.

Timmy has Opitz G/BBB syndrome, a genetic syndrome that is associated with airway abnormalities and several other medical conditions.

Timmy breathes through a trach and has a feeding tube. He relies on several pieces of specialized medical equipment, including a ventilator (at night), a pulse oximeter, a nebulizer, a machine that provides intrapulmonary percussive ventilation, and an oxygen concentrator (when he’s sick). 

We have excellent employer-sponsored health insurance that allows Timmy to thrive at home. That insurance keeps him healthy and provides for the medical supplies and equipment that he relies on; it also allows us to access out-of-state specialists, which is necessary because Timmy’s condition is rather rare. Quality healthcare and excellent insurance means that Timmy lives a fairly normal kindergartener life; it also drastically reduces the cost of his medical care because we are able to avoid lengthy in-patient hospital stays.

Timmy spent his first six months in the hospital. He was born just six days after the initial provisions of the Affordable Care Act kicked in. Among those was a ban on lifetime maximums. Our insurance policy at the time included a lifetime limit of $1,000,000, which Timmy would have reached by the time he was three months old. Because of the ACA, we didn’t lose our insurance. Timmy was born in Ohio and was approved for the Medicaid waiver when we finally brought him home; however soon thereafter we moved to Maryland and have been on the Medicaid waiver waiting list for nearly six years. We are managing because my employer-sponsored insurance is very good. However, because our insurance does not cover daytime nursing (kids usually access this service through Medicaid), we cannot both work outside the home. If Medicaid cannot even manage current needs, what will happen to children like ours when the proposed drastic cuts are implemented?

Timmy is thriving primarily because we have great insurance. Even with the ACA, our employment options are extremely limited because of Timmy’s insurance needs. Under the proposed healthcare bill, a loss of employment, a change in jobs, or even a decision on the part of our insurance company to reduce covered benefits would be devastating, both for Timmy’s health and for our family’s finances. Essential health benefits are just that–essential. What would we do with an insurance plan that didn’t cover hospitalizations, durable medical equipment, or outpatient care?

Submitted by Mark and Michelle, Timmy's parents

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Charlie

Age 5, Virginia

Meet Charlie. She is five years old and loves playing outdoors, live music, things with numbers, and anything with animals.

Charlie was born more than three months early and, as a result, is developmentally delayed.

Currently, Charlie requires physical therapy (PT), occupational therapy (OT), and speech therapy. She has a g-tube (feeding tube) and wears orthotics.

What does access to affordable, quality healthcare mean to you? Affordable care is the difference between independence as an adult or permanent disability.

How has the ACA and/or Medicaid helped you? Due to a three month NICU stay, Charlie would have exceeded her lifetime cap before she ever came home for the first time. Then, she would have been uninsurable due to her birth being a preexisting condition. Also, Institutional Medicaid paid for a large portion of her NICU stay. Upon discharge, a Medicaid waiver helps with out of pocket costs and provides services that insurance doesn’t cover. She would not be where she is without any of these things.

The changes in the proposed healthcare bill would cause Charlie to drastically lose access to these services. Receiving healthcare services is her chance to leave a life-limiting disability behind.

Submitted by Charlie's mom, Rebecca

(For more on Charlie’s story, see this CNN story that featured Charlie and Rebecca.)

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Aadi

Age 4, North Carolina

Meet Aadi. Aadi has a smile that warms your heart and lights up a room. He was born 2 months premature and had a life threatening situation occur at birth. The medical team was able to save his life, but he had an hypoxic brain injury which led to severe cerebral palsy, periventricular leukomalacia, seizure disorder, legal blindness, and severe global developmental delay. Today, Aadi needs total care and full assistance with feeding, sitting, standing, and personal hygiene. He has frequent ear and respiratory infections and receives follow-up care from a neurologist.

Aadi was recently accepted into North Carolina’s Medicaid waiver program and will now have access to vital medical services his family’s employer-based health insurance didn’t cover, like a nurse aide. Aadi’s father Dipendra says: “Just having employer sponsored private health insurance is not enough to cover the medical bills incurred during care of a medically fragile child. Cuts in Medicaid mean Aadi could be denied healthcare access, and could even mean the waiver program going away. I can’t even imagine the horrible situation that Aadi and many other medically fragile kids could face. For the parents it will be a huge financial and economic constraint. Bottom line is that we will go broke and we will not be able to contribute to the economy as we try to take care of our child. It’s a lose-lose situation for everybody!”

Submitted by Dipendra, Aadi’s father

Xiomara

Age 4, Maryland

Meet Xiomara. After spending the first five months of her life in the hospital, Xiomara is eager to explore the outside world. She loves going to the playground, library, school, and grocery store. She enjoys meeting new people and visiting new places. Most of all, she loves watching Sesame Street and playing with her big brother.

Xiomara has Tracheobronchomalacia, Chronic Lung Disease, Chronic Kidney Disease, and Global Development Delays. She has a tracheostomy and is ventilator and oxygen dependent. She also has a feeding tube for all her nutrition needs.

Despite a healthy pregnancy and uncomplicated birth, Xiomara was born with multiple significant health issues. Access to quality health care covered by our health insurance means Xiomara received the care she needed during an extended NICU hospitalization, and she can now live at home with her family and be monitored by specialists in regular outpatient appointments.

Medicaid has helped Xiomara receive the habilitative therapies she needs to catch up on her developmental milestones, including physical therapy, occupational therapy, feeding therapy, and speech therapy.

If lifetime caps or pre-existing conditions are reinstated, she could be uninsurable and our family could be bankrupted...and she still wouldn’t get the medical care she needed thus severely impacting her quality of life.

Submitted by Elena Hung, Xiomara’s mother

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Simon

Age 11, Maryland

Meet Simon. He loves music, Disney movies, and playing Mario Kart with his big sister.

Simon has Cerebral Palsy, Hydrocephalus, a rare form of Epilepsy, and a unique genetic disease. Simon's medical needs include: Medications (including infusions), regular testing both inpatient and outpatient (bloodwork, EEGs, and MRIs are a regular thing), Medical equipment (a pulse oximeter, AFO braces for both legs, a walker, and a wheelchair), frequent doctor appointments with a wide range of specialists (both local and out of state), surgeries and emergency care, maintenance of his VP shunt, therapy multiple times per week, specialized education, neuropsychological appointments, and other evaluations.

The protections in the ACA prevent us from losing healthcare/going bankrupt despite Simon's multiple pre-existing conditions and the high cost of his care. Though he's  currently on a waiting list for Medicaid, his school is still able to provide vital therapies to all students through its funding. In the future, Medicaid will be the only option for Simon to get the medical care he needs after he ages out of our insurance.

Medicaid and the protections mandated by the Americans with Disabilities Act also provide support for the vital programs and accessibility accommodations that will allow Simon to stay home with his family and in his community, with as much independence and quality of life possible, preventing him from becoming institutionalized. 

Submitted by Laura Hatcher, Simon’s mother

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Jack

Age 6, Virginia

Meet Jack. He loves all things science related, especially weather and storms. He does experiments of his own making regularly. He also loves to swim in the ocean and play with other children.

Jack has Cystic Fibrosis, Allergic Broncho Pulmonary Aspergillosis, and Distal Intestinal Obstructive Syndrome.

WHAT DOES ACCESS TO AFFORDABLE QUALITY HEALTHCARE MEAN TO YOU?  Everything, it is the difference between life and death for my baby and thousands of other children like him.

HOW HAS THE ACA AND/OR MEDICAID HELPED YOU?  Eliminating pre-existing conditions, my son has been a pre-existing condition since 4 weeks of age. He already cannot get life insurance; prior to the elimination of pre-existing conditions our options and his for healthcare were so much more limited. Should we have a lapse in coverage at any time, it was feasible that he could go without care for a minimum of 12 months while we wait out the clause...that would be fatal for him. We cannot afford his care on our own, just one of his 14 medications is $19k per month, another is $6k per month. He needs them to perform the basic function of breathing.

HOW WOULD MEDICAID CUTS AND/OR ROLLBACK OF ACA PROTECTIONS AFFECT JACK?  The return of pre-existing conditions is the most terrifying aspect for me. Why should an insurer be allowed to tell a child who was born with a condition that they are too much of a risk to insure? Neither I nor my son chose this for him; my government should be doing everything in its power to help me save him and children like him. They are important, their lives matter. They need to be given every opportunity to thrive and participate in every moment of their life just as healthy people do.

Submitted by Tasha, Jack’s mother

Victor

Victor

Age 13, Texas

Meet Victor. He loves going to school with his friends and playing baseball on the weekends. He's a big fan of all types of music, especially Beastie Boys and anything with drums. He loves when others dance with him and going to the roller rink when the lights are low and the disco ball is on. He laughs when his younger brother gets into trouble, loves swings and attending social events. When the weather is good, he loves to go to the zoo, take a stroll, visit parks, ride his tricycle, go in the pool and attend outdoor festivals.

At birth Victor seemed "typical," but seizures began at only 10 days. He had Infantile Spasms – the worst seizure diagnosis for an infant – with upwards of 50 seizures per day. Vic was diagnosed with epilepsy at 12 weeks of age, after a long convulsive status seizure. Victor has no known syndrome, but several diagnoses including: cerebral palsy, cortical vision impairment, scoliosis, reflux, restrictive lung disease, spastic quadriplegia, intellectual developmental disability. He had spinal fusion surgery in 2016, and most recently had a double hip reconstruction. Victor is a very special bionic boy who smiles through it all!

Prior to the ACA, when Victor was an infant, we spent many hours and sleepless nights in the hospital. Life was a constant worry about how we'd survive if his medical costs went over his lifetime limit of $2 million. By the age of 2, Victor's total healthcare costs reached over $600,000 and the term “pre-existing condition” had appeared on more than one denial letter. There was nothing during my pregnancy which indicated that my son would have any health concerns. Every day that passed, I was haunted by Victor’s unknown underlying health conditions and how we’d manage raising a disabled child. On top of it all, the financial stressors grew each time I opened a hospital bill and insurance letter.

Then came the Affordable Care Act, which eased many of our worries. Vic still waited 8 years before he came off of the Medicaid waitlist, thankfully my husband had a very good insurance policy through his employer. But everything changed when we relocated out of state. I quickly learned not every State’s Medicaid program is the same, and we underwent another lengthy Medicaid application process. As a single-earner family, we found ourselves facing even more uncertainty when my husband’s job situation suddenly changed and he was unemployed. It was an extremely stressful year! Fortunately, Victor was finally accepted into Texas’ Medicaid waiver program

Medicaid helps manage our son’s high medical costs. Victor's 2016 medical expenses cost over $600,000. While a little over half was covered by private insurance (which could NOT deny care because of pre-existing conditions), Medicaid paid most of the remainder. We understand how the #ACA and #Medicaid have helped our family. f yet another proposed ACA repeal bill is not voted down as they were previously, we know the reality we face: medical bankruptcy as our son suffers. We also know the cost to fellow tax-payers would be 6x greater if we were faced with the grueling decision to institutionalize our dear boy to avoid bankruptcy and homelessness; rather than simply maintaining the health care we have now.

Without Medicaid we would have had to earn well over $500,000/year to cover Victor’s medical costs and our regular living expenses. The average American household income does not earn $500,000/year – nor do we! Multiple breathing treatments a day, oxygen, daily medicines, nursing care, therapies, medical equipment, and Victor’s overall civil rights are at stake every time congress proposes an ACA repeal bill, or plan to gut Medicaid. None of these plans make any sense unless the goal is more sinister. If the goal is to save taxpayers money the repeal plans and gutting Medicaid is not the way to do it! Disruption of the insurance markets, and putting lives at-risk will most certainly cost taxpayers more.

Sharing our story is what helps create CHANGE and we must continue telling our stories and striving to do better. Affordable quality healthcare is peace of mind. It is the difference between life and death or going bankrupt! All lives are important and should be valued – no matter a person’s age, ability, socio-economic background, religious beliefs, cultural background, or education level. Health care is a human right and a moral obligation to support LIFE and cherish every second of it. There is no good reason for Americans to be denied quality healthcare for all. I will continue to share our story about how we live pro-life every day!

Submitted by Laura, Victor’s mother

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Jack

Age 10, Illinois

Meet Jack. He loves Mickey Mouse, watching bubbles, and being read books.

Jack has cerebral palsy and a seizure disorder. He is developmentally delayed and requires a trach to breathe.

CURRENT MEDICAL NEEDS:  Jack has many medical needs. He has currently been in the hospital since January 11, 2017, waiting for enough home nursing so that he can be discharged home. He was admitted for gastrointestinal surgery. Due to complications from surgery, he now has a trach.

WHAT DOES ACCESS TO AFFORDABLE QUALITY HEALTHCARE MEAN TO YOU?  It means that we can receive the necessary and complicated medical care that our child needs without financially devastating our family.  I had to quit my job to care for him.

HOW HAS THE ACA AND/OR MEDICAID HELPED YOU?  It has helped him to receive the extensive medical care he requires to remain as healthy as he can and have a good quality of life even with his severe disabilities.

HOW WOULD MEDICAID CUTS AND/OR ROLLBACK OF ACA PROTECTIONS AFFECT JACK?   It could affect his medical care, his quality of life, and financially ruin our family.

Submitted by Lynn, Jack's mother

Claire

Claire

Age 9, Alaska

Meet Claire. She loves her dogs and meeting people.  A social butterfly with no fear. Lots of hugging for everyone.  Most well-known child advocate in the state.  Loves music and dancing.

Claire is a trauma survivor - completely blind, seizure disorder, severe developmental delays and mental health complications due to child abuse and attack at 3 months of age.

CURRENT MEDICAL NEEDS:  Speech therapy, OT, PT, psychiatrist, medication, neurological care for seizures, compromised immune system, behavior management, aides for blindness

WHAT DOES ACCESS TO AFFORDABLE QUALITY HEALTHCARE MEAN TO YOU?  Funding for the services necessary for Claire to receive and still live at home.  She is a child who would require nursing home level of care without these services.

HOW HAS THE ACA AND/OR MEDICAID HELPED YOU?  Saved her life!  Without Medicaid and services available, she wouldn't be able to speak or walk. Couldn't go to school or have friends and live with her adopted family who adores her. She would have died or been institutionalized (worse).

HOW WOULD MEDICAID CUTS AND/OR ROLLBACK OF ACA PROTECTIONS AFFECT CLAIRE?   Funding cuts would reduce services and states would be forced to cap the amount of money allocated per recipient; prescription coverage is considered optional!  Her meds are $7K per months; without them her seizures would require her to be hospitalized at last daily - seen through the ER.

Claire is an amazing child who inspires others daily by overcoming her challenges, and helps her grandmother advocate for all disabled children in Alaska.  She is at protests, rallies, political functions and regularly appears before the State Legislature.

Video about Claire: //vimeo.com/234104193

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Submitted by Shelly, Claire's grandmother

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Myka

Age 7, California

Meet Myka. She loves the Girl Scouts, ice skating, playing with her friends.

CURRENT MEDICAL NEEDS:  Myka has a congenital heart defect. She's already had two open heart surgeries and will need a third in future.

WHAT DOES ACCESS TO AFFORDABLE QUALITY HEALTHCARE MEAN TO YOU?  No lifetime caps (she hit $500k before first birthday) and no discrimination for preexisting condition.

HOW HAS THE ACA AND/OR MEDICAID HELPED YOU?  We have a private, unsubsidized healthcare plan due to my husband opening his own business. He was able to do so b/c the ACA protected Myka.

HOW WOULD MEDICAID CUTS AND/OR ROLLBACK OF ACA PROTECTIONS AFFECT CLAIRE?   She could lose her healthcare due to her serious preexisting condition.

Submitted by Angela, Myka's mother

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Ethan

Age 8, West Virginia

Meet Ethan. He loves piano, horseback riding, going to church, and spending time with his family and friends.

Current Medical Needs: He has Congenital Myasthenic Syndrome - Slow channel. G-tube, tracheostomy, night time mechanical ventilation, walker, stroller, pulse oximetry

What does access to affordable quality health care mean to you? Ethan will have treatment like OT and PT and maintain access to the CDCSP Waiver which serves as gap coverage with his private insurance. 

How has the ACA and/or Medicaid helped you? Ethan received Medicaid as a result of a waiver program which covers his home nursing, enabling him to attend public school. He also receives therapies which have improved his quality of life by increasing accessibility. As a child with a genetic condition he will never be denied lifesaving medical coverage.

According to Ethan's mom, Christy, "As he grows, we are teaching Ethan how to be a responsible citizen who gives back to his community, and Medicaid has given him to tools to do so. He attends school with the support of a licensed nurse, and his stroller and wheelchair allow him to explore our neighborhood. If you ask him what he wants to be when he grows up, Ethan will confidently respond: 'a substitute assistant principal, children’s doctor and barber.'"

Ethan is a sweet and smart little boy. With the current programs in place he has the ability to grow into a fully functioning member of his community. College and the workforce are in his future. If he loses access to public school due to the loss of a nurse his potential would be limited. 

Read more about Ethan in this Op-Ed written by his mom, "My son's life depends on Medicaid. When will lawmakers stop sabotaging his care for political gain?"

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Emma

Age 4, North Carolina

Meet Emma. Emma enjoys playing with balls, blocks and exploring outside in the grass.

Current Medical Needs: Emma doesn’t have an overarching diagnosis, but she is a twin born at 28 weeks with bilateral vocal cord paralysis (BVCP), neurological deficiencies, global developmental delay, severe Reflux/GERD, nonverbal with tracheostomy and gastrostomy, and pulmonary disease. Emma needs 24h "eyes on" care. She requires frequent suctioning to clear secretions from her trach, multiple nebulizer medications, 100% gtube feeds (16hrs/day), incontinence support along with 100% support needed for self-care.

What does access to affordable quality health care mean to you? Not drowning in debt to provide basic, life-sustaining care for my child.

How has the ACA and/or Medicaid helped you? Our private insurance will not cover Emma's in home nursing, a majority of her general and respiratory supplies and the frequent therapies she needs to make progress. Medicaid is covering that different that would be financially insurmountable if she were to lose it.

Read more about Emma in this Op-Ed written by her mom, "Hold Your Breath."

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Caroline

Age 8, Virginia

Meet Caroline. 

"She [Caroline] is very observant and engaged, and she understands everything we say to her. She uses her eyes and makes sounds to communicate, and she is also learning to tell us what she wants with a computer that tracks her eye movements. Caroline is not defined by her missed milestones, but by her strength and sweet spirit. She loves spending time with her family and friends. She is daddy’s little girl. She loves books about dinosaurs, and her favorite movies are Tangled and Beauty and the Beast. In a lot of ways, she’s just like any other girl her age.

But unlike typical girls, Caroline’s medical needs continue to worsen and grow more complex with time. Even with four medications to control her seizures, they keep coming. Caroline had 85 seizures last year alone. She also needs medication to keep her from vomiting and medication to let her know when it’s time to sleep. Caroline’s muscles and tendons are often very tight so she has to take yet another medication and wear braces on her ankles and hands to keep contractures from developing. Caroline’s condition also makes her susceptible to pneumonia and respiratory failure."

Read more about Caroline in this article written by her mom, Marta Connor - "Medicaid Fulfills Crucial Role for Children with Special Health Care Needs Like My Daughter."

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Abigail

Age 8, Pennsylvania

Meet Abigail. She loves music and dancing. She loves to move with the trees when the wind makes the leaves dance. She loves all things Disney likes to cuddle her Mickey Mouse dolls. She loves her big sister and her big brother. She is the most authentic person you will ever meet, never afraid to just be herself.

Abby has a rare genetic syndrome called Primrose Syndrome. She has epilepsy and mitochondrial dysfunction which impacts many of her organs. Medicaid helps her family significantly. Even though her family has private employer-based insurance, it wouldn't be possible to afford Abby's extensive medical bills without Medicaid. It has been essential in allowing Abby to access the care she needs to grow, live, and participate in her community.

Abby is Deaf-blind and attends third grade at a local school for Deaf children. Even though she can't speak or sign, she understands what people are saying and she cherishes her friendships. At school, Abby receives multiple therapies and specialized education. Medicaid assists the school district in funding these therapies as well as the 1-1 aide that Abby needs.

Abby uses a wheelchair when she is out in public, which means she needs accessible rams in stores and restaurants as well as accessible public transportation. Additionally, as a Deaf child, Abby needs an American Sign Language interpreter in order to understand what is being said. The ADA allows Abby to access her community, just like every other kid.

Submitted by Erin Gabriel, Abby’s mother

 

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Louie

Age 4 Louisiana

Meet Louie. Louie is a bright, funny, sweet kid who's always quick with a hug. He loves reading and numbers, painting, Thomas the Tank Engine and playing in water, sand and dirt. 

Louie has autism spectrum disorder and global developmental delay. He uses a communication device to speak and he receives more than 30 hours of therapy a week, including speech, occupational, physical and ABA. 

Louie's family has health care coverage through the ACA exchanges. The increasing cost of health care is a burden for Louie's family, and his mom says they have to sacrifice a lot to afford his care. But that isn't what has been keeping her up at night:

"What I lose sleep over isn’t the thought of paying for the insurance; it’s the fear that my child could lose access to these protections altogether. He would never have been insurable before the ACA. I have spoken to families who were bankrupted trying to keep up with therapy bills. What I want is for my child to have the best possible shot at living a healthy and happy life. But he needs this care for that to happen."

Submitted by Kathleen Ide, Louie’s mother

 

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Penny

Age 7, New York

Meet Penny. She is six years old and loves being around her friends and loved ones, especially when she can spend it outside.  She’s a true nature girl and can gaze at the trees, flowers, and the vibrant colors of her surroundings all day.  Take her to her favorite koi pond and she’s at bliss.

Penny has Aicardi Syndrome, a congenital neurological disorder that severely impacted her physical and cognitive abilities.  She needs a wheelchair to get around and a G-tube to eat, and often gets respiratory illnesses including pneumonia which require her to use oxygen.  Penny also has seizures, which need to be monitored constantly.

The ACA and Medicaid helps Penny get the therapies and equipment that not only help her live, but make her comfortable, keep her out of pain, and give her the quality of life every child deserves.

Penny's dad, Josh, says this about her current care: "Three years ago, we had a series of conversations among ourselves and with Penny’s doctors and decided that considering how traumatic, painful, and precarious Penny’s life had become at home, it would be the best choice for us and her if she moved into an excellent children’s facility nearby.  I can’t imagine I’ll ever do anything harder in my life.  But it turned out to be a Godsend.  We see our Penny all the time, and she is so well taken care of.  She has nursing care 24 hours, as well as a staff of technicians and nursing assistants who care for all of her activities of daily life, from dressing her in the morning to bathing her and putting her to bed at night.  The place is beautiful, with recreational areas, kids wearing their actual clothes instead of gowns, toys, decorations, a wonderful playground.  She’s so happy there and as healthy as can be possible.  Maybe .0000001% of people could actually afford this facility on their own.  Penny is on institutional Medicaid, as most of the children there are.  That means everything is paid for, and her facility is given enough money from Medicaid to make the facility one that medically fragile children need and deserve. "

Penny's dad also says this about the way being a special needs father can bring out the best in some dads: "I have come to know some of the most spectacular special needs dads that I could ever meet. I’ve known dads to build entire rooms to accommodate their kids, convert a van themselves, carry a 60-pound daughter miles through the hilly woods because she loves it, change jobs and move the family cross country for better services for their children, and create enough adaptable devices (and Halloween costumes!) to earn an engineering degree."  

Read more about Josh's reflections on being a special needs father in his Little Lobbyist blog post  and listen to his interview on the podcast for and by caregivers "Who Lives Like This?" 

Submitted by Josh Fyman, Penny’s dad

 

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Louisa

Age 3 Michigan

Meet Louisa. 

She loves playing on the swingset and going for wagon rides with her brother, reading stories, playing games, listening to music, and everything other kids her age like to do!

Louisa has Hypoplastic Left Heart Syndrome (missing 2 chambers of heart), tracheomalsia, and gaestroparesis. She is awaiting a 3rd stage heart surgery, had a tracheotomy, and is fully tube fed. She uses a pediatric medical walker to help her get around.

Before Louisa was born, her parents knew she would need open heart surgery at just days old, and that if she survived she'd need another surgery at 4-6 months, and yet another at 2-3 years old. They didn't know she'd need a trach and be ventilator dependent for the first 2.5 years of her life.

Louisa's mom says that someday, Louisa will likely need a heart transplant.

"ALL of these conditions and the necessary medications and medical supplies are beyond what both my husband and I can ever earn and save. It is our fear that an insurance company could tell us she is not insurable, or has met a maximum.

If pre-existing conditions weren’t covered, our children would die. If you allow insurers to have a limit for lifetime, our babies would have hit it at 6 months old.”

Read more about Louisa and her family's journey here.

Submitted by Andrea Pietrowsky, Louisa’s mother

 

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Owen

Age 15, New York

Meet Owen. Despite his many physical challenges, Owen is a really smart kid who loves science, books, mystery shows on TV, trips to New York City's great museums and especially strolls through the Brooklyn Botanic Garden. He has an indomitable spirit and is incredibly brave and funny and filled with curiosity about the world. He loves his younger brothers very much, but like all teenagers, sometimes they get on his nerves

Owen was born with a genetic disorder known as Spinal Muscular Atrophy Type I, which means he lacks the protein that supports motor neuron activity. Owen is completely paralyzed and uses a wheelchair for mobility, depends on a ventilator to breathe at all times and tubes for feeding. He requires nursing care at all times and assistance with all aspects of daily living.

Losing Owen's Medicaid waiver would be an absolute disaster for our family. Medicaid pays for those things that our private insurance will not cover, most importantly the home nursing care that allows me to work outside the home. My job  provides our income and private health insurance coverage, and losing our nursing would jeopardize everything that holds our family together. Medicaid also pays for really important things like ambulance transport to see his doctors and non-durable supplies, without which we could not care for Owen safely.

Owen loves trips to New York City's great museums and especially strolls through the Brooklyn Botanic Garden. Unfortunately, the subway is largely inaccessible, which is a huge problem! (read more about the difficulty presented by New York City's inaccessibly subway here) That said, New York is a pedestrian city, and curb cuts at every intersection make the difference between being able to have Owen out and about safely and streets being just totally impassable.  

 

Submitted by Ellen Goldstein, Owen's mother

 

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Esther

Age 16, Arkansas

Meet Esther.  Estie was born with a unknown muscle disease. When she was 3 months old, she was adopted by her forever family, and at only 6 months her lungs collapsed. Estie has a tracheostomy and uses a ventilator to breathe, but this does not stop her!

Estie is entering the 11th grade, she sings in the choir, is in the chess club, and is a straight A student. Thanks to the Individuals with Disabilities Education Act (IDEA), Estie qualifies for an Individualized Education Plan (IEP) that provides things like school nursing and transportation which helps her to participate in school activities and has contributed to her success as an honor society student.

Medicaid cuts are Estie's family's greatest fear. They rely totally on medicaid for all her equipment, school nursing, and doctor appointments and procedures. Without Medicaid, they would not have the financial ability to provide for her. 

Estie's medical conditions and disabilities do not stop her, but losing access to medical care and nursing assistance could. When she graduates from high school she will no longer have day time care. She would like to go to college, but would have to have someone with her at all times, which isn't currently an option covered in their state.  

Estie speaks to others about what it’s like living with her disability and hopes to be a motivational speaker some day. In fact she's already gotten started. On June 26, 2018 Estie spoke at Little Lobbyist's first bicameral press conference.

You can watch it here:

   

Submitted by Lori Johnson, Estie's mother

 

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Liam

Age 10, California

Meet Liam. Liam loves to ride his bike and hang out with his mom and dad watching the San Francisco Giants play. Liam's smile touches the heart of everyone he meets.

Liam was born with a heart defect and has had multiple surgeries. After his 3rd surgery at 19 months, he had an hypoxic brain injury which left him quadriplegic, trach and JT dependent, with cortical visual impairment and daily seizures. 

Liam requires care 24/7 at home and at school. Liam loves school, and the therapy he receives there helps him maximize his abilities. Liam also loves to be out and about, though his mother says one of her dreams is for there to be at least one bathroom in every public building with an adult changing table. It's much more comfortable to explore the world when you're clean and dry!  

His mother also says that without the ACA and Liam's Medicaid waiver, their family would be lost. 

"Before the brain injury Medicaid covered anything connected to his heart surgeries. This would have been over $1.2 million. With lifetime caps, he would have lost coverage before he was 5.

After the brain injury, for 6 months we had an ACA policy. We’d been paying $1800 for COBRA that had run out. That expense got cut in half because of ACA.

Now I have insurance through work, but without the community based waiver, I wouldn't have a job. Liam requires care 24/7. Without the nursing provided through the waiver, not only would I not be able to work, I wouldn't be able to sleep. We wouldn't be able to get him to the doctor because we can't even drive with him alone.

Because of the waiver, I was able to finish nursing school and earn a MSN. I now work as a case manager at a FQHC clinic helping developmentally disabled adults get the care they deserve. Cuts to Medicaid will hurt them all. We need to be their voice."

   

Submitted by Patty Ryan, Liam's mom

 

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Aurora

Age 4, Minnesota

Meet Aurora. Aurora loves her siblings and she loves preschool. On her first day, she introduced herself as "Princess Aurora" and has been charming everyone ever since with her smarts, sass, and singing.

Aurora has intractable epilepsy. She needs 5 medicines each day to control her seizures, as well as 3 rescue medications. The cost of prescriptions has been crushing for her family. Her mom says: 

"Right now just one of my daughters medications is $3,000 per month. This past week she required an ambulance ride to Children’s Hospital which will come back over $5,000. Come December we will be taking a loan against our home in order to afford her medical costs in January as we have a $7,500 out of pocket maximum, and only 50% of that can be prescription costs. Our monthly premium is $1,000.

If the pre-existing condition clause was brought back or a lifetime maximum was allowed, my daughter would have no coverage. Our medical claims this year have totaled 2.6 million. This isn’t affordable. We shouldn’t have to take out a loan to keep her alive, but we will. "

   

Submitted by Lindsay, Aurora's mom

 

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Ethan

Age 4, New Jersey

Meet Ethan. Ethan loves his family, fireflies, and hiking through the woods to gather stick "bouquets" for his mom (because he likes sticks better than flowers).  

Ethan has heterotaxy syndrome, a rare condition causing internal organs to be malformed, misplaced, multiplied, or missing entirely. Ethan was born with 2 left lungs, 5 spleens, and  9 congenital heart defects. In his first four years of life, he's had four open heart surgeries.

In a series of tweets that went viral in June 2017, Ethan's mom Alison says:

"Without insurance we would owe $231,115 for 10 hours in the OR, 1 week in the CICU and 1 week on the cardiac floor. He's had four of these surgeries, some more involved than others. The one before this had him in the CICU for three weeks. We're hopeful that going forwards he'll need fewer and smaller surgeries, but this was not the last time they'll open his chest.

Nearly a quarter million dollars for one surgery. Reinstate lifetime caps and he's out. He blew past the million dollar mark long ago. As long as we have him with us (and I hope with everything in me that it's forever) we will need to pay for expensive medical care. A lifetime cap on benefits is the same as saying, 'Sorry, you're not worth keeping alive anymore. You're just too expensive.' Look my son in the eyes and tell him that he's fought so hard to be here but sorry, you're just not worth it anymore. I dare you."

Read more about Ethan and his mom Alison Chandra in their CNN interview here, and in the article Alison wrote for Vox about her experience going public (and viral) with Ethan's health care story. 

   

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Camila & Rafael

Age 5, Texas

Meet Camila & Rafael. Born at only 26 weeks and just 1.5 lbs each, "Mila" and "Felo" are miracle twins and best friends who’ve come a long way since their early start in the NICU.  

Mila spent her first 94 days in the NICU, has short stature and developmental delays. Felo spent 204 days in the NICU, has chronic lung disease, short bowel syndrome, a chromosomal issue, and Autism. Both children see multiple specialists, have been in and out of the hospital, and receive hours of therapy every week.

Currently, the miracle twins are doing great thanks to access to affordable health care and Felo's additional support from Medicaid. They have a great medical and therapy team, are able to be included in school with their non-disabled peers, and enjoy the happy childhood at home with their family that all kids deserve. However, if they lose the protection of the ACA or supplemental Medicaid, their family would not be able to access the care the children need to continue to survive and thrive in their community. Their mom worries about needing to return to the days when kids with disabilities and complex medical needs were segregated from their peers, often being forced to live in institutions away from the families that love them.  

Their mom, Tory, talks about the very real threat kids like Mila and Felo are facing in the article she wrote, "Cut Health Care Access, Jeopardize Lives"  –

"About a year ago, Texas cut $350 million to Medicaid, delivering a direct and severe blow to families with children with disabilities. This cut meant that the state transitioned our Medicaid services for children with disabilities to managed care organizations (a group of private hospitals and organizations)

In instances like the failed “skinny repeal,” our national congressional leaders further attempt to undermine our health care. And on the ground, hundreds of children across Texas have seen longer wait times for medicine, fewer therapy lessons, and — in some cases — have been denied access to any Medicaid support at all.

While families and allies across Texas stood up in protest to these cuts, government officials and politicians decided to play politics with our children’s lives.

Recently, Sen. Orrin Hatch, R-Utah, called people who supported the Affordable Care Act "the stupidest, dumbass people I've ever met."

Imagine having your child’s life directly depend on lawmakers’ decisions. This is our everyday reality.

Join us by holding elected officials accountable for their actions against health care. Join us in speaking up for children — like Mila and Felo — who cannot speak up for themselves.

Like any parent, we want the best for our family. Like any citizen, we want the best for our community. We are asking our elected officials to do the same."

– Submitted by Tory Guerra, Camilla & Rafael’s mother   

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Joey

Age 16, New York

Meet Joey. Joey loves technology, music, reading and traveling (riding on trains and in elevators are his favorite). He's also very creative - making original music, graphics, and even acting! Joey recently performed in "Readers Theater" using his communication device. He had 30 lines and didn't miss a single one.  

Joey never gives up, he just tries harder.

Joey has 22q Deletion, a genetic disorder that can cause 180 different medical conditions. Joey has Tetralogy of Fallot, a compromised immune system, slow colon motility (he needs a g-tube for nutrition), and oral motor issues. Joey has severe developmental delays and apraxia - he’s completely nonverbal and uses a communication device.   

Through Medicaid and the support of school based services Joey has been able to survive and thrive.  Joey's mom Debbie never gives up either, she says: 

"I’m a very dedicated single mom caring for a very sick kid - without Medicaid - I’m literally terrified to even finish that sentence. It takes a great deal of diligence and care to both check for new symptoms and treat current conditions. Access to health care means Joey can survive. He would not be alive without it. Nothing is more important- nothing. Without Medicaid and/or work pre-existing condition clauses he will die. "

For many families like Debbie and Joey's, Medicaid provides essential medical care and supportive services that help them stay in their homes and communities, working, creating, and contributing.  

Submitted by Debbie Buxton, Joey's mom

   

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Josephine

Age 2, Virginia

Meet Josephine. She could sit all day and have stories read to her. She loves puzzles, big trucks, swings, bubbles, a great playlist, and getting into trouble. Every day she grows into a more inquisitive and vibrant human being.

Josephine was born at 24 weeks gestation. She weighed 1lb 12oz and was 12 inches long. She has Chronic Lung Disease, Pulmonary Hypertension, and GERD as a result of extreme prematurity and low birth weight. She has a tracheostomy and a ventilator to support her developing lungs. She uses a g-tube for nutrition, fluids, and medications. She's globally delayed, has low tone, and needs orthotics, a gate trainer, and a wheelchair for school this fall. She's had hours and hours of physical therapy to work on basic activities, like sitting and walking.

Josephine's mom says she can do almost anything. We agree -- Jo has been visiting the Capitol with the Little Lobbyists since she was barely a year old. She shares her vibrant smile and love of bubbles with legislators from all over the country, reminding them that no matter what medical needs a kid might have, at the end of the day - our kids are just kids and they just want a chance to grow up.

In an interview with abc news "Tales from patients who stand to lose a lot from GOP health bill"  Jo's mom Samantha said:

“I never thought in a million years I would be someone who needs Medicaid. I think what people don’t realize is what the actual cost of healthcare is … If our family was just a healthy family and were talking about an occasional cold, our insurance would be fine. But when you start talking about $26,000 a month, unless you are wealthy, you don’t have that money.” 

   

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Jillian

Age 5, Wisconsin

Meet Jillian. When she grows up she wants to be a doctor, nurse, astronaut, teacher, music therapist, and work at the Ronald McDonald House. Jillian sees her medical needs as her super powers.

Jillian has an undiagnosed medical condition. She needs supplemental oxygen to breathe, a g-tube for nutrition, and a wheelchair to get around (which she decorates to make more fashionable). She's able to explain scary medical stuff to her little sister (who shares her yet-undiagnosed condition) in a way that won't make her afraid. She's brave, empathetic, and always stands up for what's right.     

Jillian and her sister are covered under the "Katie Beckett Waiver" - a medical need (not income) based medicaid waiver established by Ronald Reagan in 1981 after he was moved by the story of a child named Katie Beckett, who spent most of her early years in the hospital because she needed a ventilator to breathe and Medicaid would not cover treatment at home.  Since established, more than half a million children have been able to live at home, and not in the hospital, thanks to this program.

Cutting Medicaid, making it more difficult to obtain, or converting it into a block grant program literally puts the freedom of children like Jillian at risk. Learn about the potential consequences in Jillian's home state of Wisconsin here.

Jillian loves to be a part of her community, and accessibility is really important to her. Jillian's mom Amanda says:

"Jillian uses a wheelchair when in public to get around. She gets frustrated when places are not as accessible as needed and often advocates with places to make their buildings more accessible. She talks to people about why ramps are so important. Jillian is very thankful for ADA because it means that she is able to get into so many different places and play with her friends. She also is very thankful for accessible playgrounds so she can enjoy the community."

For more information on accessible playgrounds and how to find one, check out NPR's "Playgrounds for All Children: Here's How to Find One." 

   

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Franklin

Age 8, Kansas

Meet Franklin. Every Sunday, Franklin sits in the front row at church so he can shake everyone's hand. He loves music, books, and is a wiz on the iPad. He's non-verbal but has the most beautiful laugh.

Frankie has Neurofibromitosis Type 1 (NF1). He is trach and g-tube dependent, is non-verbal, deaf and blind on his right side, and has weakness from a stroke on his left. He wears a bone conduction device to hear and uses sign language and a communication device.

Frankie receives therapy at school thanks to his IEP (Individualized Education Plan), and is now walking independently thanks to his own determination and the dedication of his physical therapists.    

Frankie is fortunate to live in a community that has done a great job at implementing accessible accomodations for people with disabilities – his school playground was recently upgraded to include wheelchair users (awesome). However, Frankie's mom says one of their biggest challenges continues to be bathrooms which don't accommodate changing areas for larger kids and adults. No one should be forced to lie on a dirty bathroom floor!      

Frankie's family was told that he wouldn't make it to see his 1st birthday, but this year he will be turning 9! Frankie's mom, Jane, says that access to health care has been critical to his well-being:

"I'm not sure what we would do without the protections of the ACA. Frankie would have long ago crossed the lifetime cap. We rely on the HSBS waiver for so many things, nursing, extra PT/OT, the list goes on and on. I'm certain Frankie would not be alive today if it were not for the access to health care we have had to take care of him."   

Submitted by Franklin's mom, Jane

 

   

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Ryan

Age 14, Pennsylvania

Meet Ryan. He's sweet, smart, and funny. He's also a great swimmer, photographer, and is very social media savvy.

Ryan has Autism, ADHD, asthma, and seizures. He takes multiple medications. At school, Ryan has made great progress thanks to his own hard work and the special education and therapy provided through the IDEA (Individuals with Disabilities Education Act) in his IEP (Individualized Education Plan).    

Right now, Ryan has health insurance and access to community support through his parent's private health insurance and Medicaid. However, Ryan is growing up fast and as his mother thinks about the future she's most worried about what changes in Medicaid and the repeal of the ACA could mean for Ryan's ability to achieve an independent adulthood.  

People with Autism already face significant barriers to employment, including discrimination. If access to health care and community support become dependent on one's ability to work, as the administration's support for Medicaid work requirements mandate, people like Ryan could be further marginalized -- shut out from the care the need and the opportunities they deserve.  Read more about "How Medicaid Work Requirements Could Harm Autistic People" here.

Submitted by Ryan's mom, Jodi

 

   

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Gunner

Age 7, Missouri

Meet Gunner. He loves to play outside and go fishing. He really loves pizza and belly laughs. He gives the world's best hugs.

Gunner has Autism, epilepsy, encephalopathy, hyperkinesis, asthma, and allergies. He needs medication, adaptive equipment, and multiple kinds of therapy – none of which are covered by Gunner's parents' employer based insurance. Fortunately, Gunner has a Medicaid waiver to cover the costly but vital care he needs that private insurance policies so often exclude.    

Gunner loves to read and goes to his neighborhood school where he's able to be included with his "typical" peers thanks to the support and protection provided by the Individuals with Disabilities Education Act (IDEA).

About Gunner's inclusive education, his mom Colette says: "It means EVERYTHING!!! The thought of IDEA rolling back makes our stomachs turn. He deserves access to grade level material and all the same experiences as his peers."

Submitted by Gunner's mom, Colette

   

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Tegan

Age 3, Arkansas

Meet Tegan. She loves to play with her twin sister Korinne, pretending, swimming, and learning!

Her dad says:

"Tegan has hemiplegic cerebral palsy on the right side of her body. She currently goes to therapy 4 days a week for occupational, physical, and speech therapy.   

We need coverage for Tegan at all costs. Otherwise her cerebral palsy would be a preexisting condition. She may also not qualify for programs that assist us with her therapy costs such as Tefra.

Tegan needs a small amount of assistance getting up and down stairs and other obstacles. Accessibility just makes these small hurdles more approachable."

Submitted by Tegan's dad, Brandon

   

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Hank

Age 10, Illinois

Meet Hank. He loves Thomas the Train, Mickey Mouse, and his service dog, Dosi. Hank is an incredibly resilient kid, he teaches his parents about life every day.

Hank has Doose Syndrome, Cyclic Vomiting Syndrome, Autism and ADHD. He has had thousands of seizures and countless hospitalizations. Hank uses a communication device, needs multiple medications, therapy six days a week, special education and one-on-one nursing while in school. 

Hank's family has employer based health insurance, but are grateful for his Medicaid waiver which acts as secondary insurance to help cover the exorbitant and continuous cost of the therapy, medications, numerous hospital stays, and procedures Hank needs to survive and thrive.

Submitted by Hank's mom, Megan

   

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Gabrielle

Age 14, Michigan

Meet Gabbie. She loves animals (especially horses), going to school, chatting with her friends on the phone, and singing in choir. She's an empathetic "old soul" who accepts people as they are and does whatever she can to help them work through problems. Gabbie has a fantastic sense of humor - dry and sarcastic - and rolls her eyes at her parents like any other teen girl.

Gabbie has schizencephaly, hydrocephalus, a VP shunt, spastic quadriplegic cerebral palsy with some dystonia, sensory processing disorder, ADHD, asthma, GERD, sensory processing disorder, she has cognitive delays, and apraxia of speech. Her diagnoses are the result of a traumatic emergency that occurred during an ER visit when she was only 4.5 months old. She had to be life-flighted to another hospital, needed 2 emergency brain surgeries, and stayed in the hospital for the next 4 months on a ventilator needing daily MRIs/CAT scans and the treatment of multiple doctors.  Today Gabbie needs assistance for all activities, uses a power wheelchair for transportation, an iPad and phone to assist with reading and writing, and a variety of other equipment – from braces, splints, and walkers to bath chairs and a special bed and sleep system to help her access her world and be her best.

Gabbie's mom Sarah says that without Medicaid: "I never would have been able to pay even a portion of that bill, being a single mom. I wouldn't be able to afford her incontinence products, or pay the insane prices for any any equipment ( a bath chair alone costs over $500). My child wouldn't have access to have even her most basic needs being met (education, sleep, bathing, moving around in the world). Without the ACA, we wouldn't last long, and it's terrifying to imagine what would happen to us."

In Gabbie's state of Michigan, Medicaid patients are now required to choose a privatized insurance company. Though she also has Children's Special Health Care and is on the HAB waiver her mother says they have not had a single service provided by the waiver in 3 years. 

Recently, Gabbie has become very interested in activism. She has participated in school walkouts, the Women's March, and March For Our Lives, and has become very vocal about the Americans with Disabilities Act.

Her mom says the ADA is not enforced as it should be: "Disability plates and placards are increasing, and yet the requirements for parking spaces has not increased, many businesses don't have the correct amount, or don't place them in the most directly accessible places as required by the ADA. Sidewalk cut-outs are either not put in, or in a location that is inaccessible. Buttons to open doors are placed in places where a person in a wheelchair could never reach. and stores are impossible obstacle courses. Our schools are not wheelchair accessible, tables are too short, not enough space in classrooms, old tiny elevators, stages with no access, too narrow doorways, field trips, class trips, parties and dances that aren't inclusive... yes, it's better than it used to be... but it's not enough and it's not enforced."

 

Submitted by Gabbie's mom, Sarah

   

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Maxwell

Age 2, Wyoming

Meet Maxwell. Max is an incredible, hilarious, spunky, 2 year old miracle who will do anything to get a laugh from his audience! He loves new toys and making music but his favorite thing in the world is his family; he loves playing with his big brother and little sister, skyping his auntie, and spend time with his parents and grandparents.

Max was diagnosed with a Congenital Diaphragmatic Hernia and Esophageal Atresia with a Tracheoesophageal Fistula in utero, and underwent 2 fetal surgeries. One complication snowballed into another, and Max spent 11 months in the NICU, and is now trached and ventilator dependent due to chronic lung disease and severe tracheomalacia. He is in intestinal failure and receives nutrition via IV. He has a large abdominal "wound" which is very difficult to care for. Max also suffered a stroke in January 2018, which further slowed his already delayed development. 

Max's medical needs are extensive and involve 24/7 care, which my his mom and dad provide because they have been unable to obtain nursing assistance. Max's father was forced to leave work and school during Max's lengthy NICU stay, and though their family currently has financial need-based Medicaid they have been on a waiting list for the Wyoming Developmental Disabilities Medicaid Waiver since May of 2018. 

Max's mom Katie says: "Access to affordable, quality healthcare is indispensable. Max relies entirely on Medicaid for his healthcare coverage, and cuts to these vital programs would take a devastating toll on our family. We are already suffering through the experience of seeing our child's health deteriorate; to be denied the care, equipment, and supplies he needs would be unbearable. Max falls ill frequently, and the severity of his conditions usually require lengthy and expensive hospital admissions. Max is home and thriving as a direct result of our ability to access and qualify for Medicaid."

 

Submitted by Max's mom, Katie

   

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Addilynn

Age 3, North Dakota

Meet Addilynn. Addilynn loves music, and gives the best hugs ever. She loves going for rides -- whether she's in her family's pick up truck, her stroller, her power wheels vehicle... she loves to be a girl on the go!

Addilynn has a unique genetic disease. She is the only known person with her specific varaition on the CACNA1A gene. Addilyn has severe epilepsy which has led to many other complications, including traumatic brain injury, vision impairment, hypotonia, apraxia (non verbal), migraines, movement disorder, and global developmental delays. She relies on her parents employer-based health insurance and a Medicaid Waiver.

Addilynn's mom Toby says: "I shudder to think what would happen if there were no protections for pre-existing conditions and the Medicaid waiver. We would not be able to afford her therapy or equipment without these things."

Addilynn loves going to school and her mom says that while the special education preschool classroom she is in is perfect for her now, she is hoping that in the future Addilynn will be able to be part of more inclusive classroom environments. 

Submitted by Addilynn's mom, Toby

   

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Isaac

Age 9, Virginia

Meet Isaac. Isaac LOVES to sing and dance! He has an incredible smile that lights up the room. When he's not singing and dancing he can be found dominating his friends and family at Mario Kart. Isaac is an active member of his church, a scout and most importantly a great friend and big brother. He is well known in his community for his resilience and bright attitude.

Isaac was born at 31 weeks with Esophageal Atresia (a gap in his esophagus). He spent 8 of his first 11 months in the ICU, part of it in Virginia, part of it in Minnesota. During this time he was kept in a medically induced sleep for 3 months. In his first year, Isaac underwent 14 major surgeries. He received a trachoetomy as a result of paralyzed vocal cords, and a feeding tube for nutrition. He came home for the first time in his life at 13 months. Since then he has undergone 12 additional major surgeries - mostly out of state. He has had his esophagus replaced with a piece of colon, and started the process to expand his now fused ribcage.

Because Isaac has a tracheotomy, he has communication challenges and receives speech therapy both privately and in his neighborhood school which he is able to attend with assistance from a nurse. Having access to the care and support he needs means that Isaac can be educated with his friends and stay in the least restrictive environment.

Isaac's mom Kim says: "Isaac did lose his insurance, he reached his lifetime maximum at just over a year old, one month before the ACA was signed into law. In one year he used a lifetime ($2 million) in care. Without access to good insurance Isaac would not be able to travel out of state to the doctors that are best able to treat him. Additionally, insurance is great, but it doesn't pay for everything. Isaac requires a home health nurse, this is paid for by Medicaid. Without this help I would not be able to work and provide for my family. There are many prescriptions and services that insurance denies, some prescription can cost up to $3000 a refill. When these are denied by health insurance Medicaid picks up the cost."

Submitted by Isaac's mom, Kim

   

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Naomi

Age 2, North Carolina

Meet Naomi. She loves to learn and sing songs, and likes to go for walks and swing on the playground. She loves Moana and Minnie Mouse. Naomi is always smiling – she is joyful and has a great attitude through life.

Naomi was diagnosed at birth with hypoplastic left heart syndrome. Sometimes surgery that can repair this condition, but Naomi's heart had only half developed and was was too malformed. She was placed on the transplant waiting list and, fortunately, she received a heart transplant at only five months old.

Naomi spent her first six months of life in the ICU, and two years later she is still frequently admitted to the hospital. Her immune system is suppressed to keep her body from rejecting the heart transplant, so she gets very sick, very easily. She needs many medications which she takes through a g-tube, which she also uses for supplemental nutrition. By her first birthday she'd already had $1.3 million in medical costs.

Naomi's mom Bethany says: "Naomi is a warrior – the strongest and bravest girl I know. Losing affordable health care and pre-existing condition protection would mean difficult choices for us. Naomi needs numerous medications every 12 hours to avoid organ rejection. They are not optional. But they are very expensive. She also needs therapy to support her quality of life. Losing protection against lifetime caps would endanger her."

Submitted by Naomi's mom, Bethany

   

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Max

Age 8, Arizona

Meet Max. Max loves reading, drawing, and playing with legos.

Max was diagnosed with Stage III neuroblastoma when he was four months old. He's considered in "stable" condition right now, but os not officially in remission and could relapse at any time. Max also has had a VSD (hole in his heart) since birth which remains open and requires monitoring.  

About access to affordable health care, Max's mom Marsheila says: "It's literally the difference between life and death for my son. We would not be able to afford his treatments if he relapsed."

Submitted by Max's mom, Marsheila

   

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Gigi

Age 6, Wisconsin

Meet Gigi. She loves to play outside, draw with sidewalk chalk and pedal her tricycle.

Gigi has a congenital heart defect that requires constant monitoring by medical providers, including a cardiologist every six months. During her last open-heart surgery, she was diagnosed with a bleeding disorder that nearly took her life. Gigi is profoundly Deaf and has partial blindness. Medicaid provides almost all of Gigi's home and school-based therapies. Without it, her mother says she would not be where she is now - a happy little girl making great progress toward a successful future.  

Gigi's mom Becky says: "Gigi is adopted. She came to us from an institution where sign language was not offered to her. She was 3.5 years old and had no language. She signs in full sentences now. She is able to tell us her favorite color, her siblings names, when she is hurt. She is able to tell us how much she loves her new service dog. This was all made possible by Medicaid and the therapies that were offered to her to support not only medical healing, but social, emotional and cognitive development. This is what holistic health care does for a child."

Submitted by Gigi's mom, Becky

   

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Dallas

Age 18, Alabama

Meet Dallas. Dallas loves watching and listening to music videos, musicals, going to camp and baseball.

Dallas has Neurofibromatosis type 1, skeletal dysphasia and grade 3 stenosis. He uses a trach to breathe, a g-tube for nutrition, a communication device, and a wheelchair to get around. Medicaid is his secondary insurance and covers the nursing he needs so his mother, a single parent, can continue to work. 

Dallas' mom Sharon says: "Limiting the amount of funds a person receives will affect the care my son receives as well as his medical supplies. If my nursing support is cut, I will no longer be able to work. How will I care for my son and me? I understand changes need to be made to but please, not at the expense our children."

Submitted by Dallas' mom, Sharon

   

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Samantha

Age 11, Maine

Meet Samantha. Samantha loves dancing, riding horses, riding her bike, listening to music, reading, play dates with her friends, and making people laugh.

Samantha has Down Syndrome and a congenital heart defect. She's had two open heart surgeries. Sami has private insurance, but Medicaid helps her family with the costs insurance doesn't cover - things like expensive copays for the doctors specializing in her conditions.

Medicaid also provides therapies and in-home support services that help Sami more fully engage with her community, learn and practice the skills she needs through programs her mother says aren't even available through private insurance.   

 

Submitted by Samantha's mom, Carrie

   

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Ellie

Age 5, Washington

Meet Ellie. Ellie loves Moana, dancing, art, and making everyone laugh.

Ellie has chronic lung and kidney disease, severe intestinal dysmotility, epilepsy, ketotic hypoglycemia, growth hormone deficiency, and probable mitochondrial cytopathy. Her medical needs include: IV nutrition and small bowel feedings, oxygen, blood sugar and pulse oximetry monitoring, frequent medical appointments, hospitalizations and therapies.

Ellie's mom Megan says: "Quality medical care allows us to focus on what our daughter needs instead of fighting for coverage.

Medicaid expansion has allowed us to get her coverage which helps fill the gaps in our primary insurance. The ACA guarantees that she can't be denied coverage due to her pre-existing conditions.

It is enough that we fight for our children day in and day out to survive and preserve their quality of life. There is so much weighing on us everyday, adding more to our shoulders is just incredibly unfair. We should not have to worry about losing insurance benefits that are so desperately needed."

 

Submitted by Ellie's mom, Megan

   

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Christopher

Age 13, Delaware

Meet Christopher. Christopher loves to be out in his community, living life to the fullest. Christopher also has severe cerebral palsy. Medicaid helps pay for the medical equipment he needs to live at home and be a part of the community he loves.

Christopher's mother, Nancy, says that without protections for people with pre-existing conditions, bans on lifetime caps on care, and the support of Medicaid: "My son would die, I would have to surrender him to an institution and he wouldn't survive. Such a traumatic transition would kill him. Our children have mothers who go far beyond to care for them, but we can't do this alone."    

 

Submitted by Christopher's mom, Nancy

   

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Ryler

Age 7, New York

Meet Ryler. Ryler loves ferris wheels, kisses, his service dog Oaty, bike rides with his Daddy, playing hide-and-seek with his little brother Reece, and a cartoon called the Bubble Guppies. Ryler was just over 4 lbs when born with a severe cleft lip/palate. He spent his first 2 weeks in the hospital while his family learned how to feed him (the cleft made him unable to suck) and he was tested for other health concerns. Ryler is one of only nine known cases of the genetic disorder Mosaic Monosomy 21. He has immune deficiency, epilepsy, a bruising/bleeding disorder, heart abnormalities, and many other medical issues. Ryler’s medical team consists of 15 different specialists, he’s had many surgeries and procedures and will need many more. Ryler’s non-verbal, has significant developmental disabilities, and until recently used a feeding tube. Ryler’s mom describes him as, “sweet, charming, curious, tough as nails, and the happiest little boy we know.”

Ryler can walk, but is very unstable and can’t manage long distances. He also has a medical alert service dog. The ADA allows his service dog to accompany him in public spaces and allows Ryler’s to have some independence.

Ryler’s mom says, “When Ryler was born, I remember one basic thing I wanted him to have (and still do) – A CHANCE. A chance to grow, learn, be part of a community, to love and be loved. The Affordable Care Act and Medicaid help Ryler and kids like him have those chances. Without the ACA, he would be uninsurable. He was born with multiple pre-existing conditions, would have exceeded lifetime maximums in his first year of life, and if I change jobs I’d fear we’d lose insurance due to lapses in group coverage. Families like ours also rely heavily on Medicaid for home nursing (which many insurance plans don’t cover), education, expensive medications, and various therapies required multiple times a week. We need to protect our care so our kids have a chance to live!” 

Submitted by Ryler’s mom, Amy  

 
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Jacqueline

Age 9, California

Meet Jacqueline. She loves music, light-up toys, and riding her adapted trike. She loves the feeling of the wind on her face and being in the water. She adores her family, friends and the village of amazing people who enrich her life. Jacqueline is fierce! Her mom describes her as, “sweet, feisty, hardworking, and determined.” She was born with a life threatening condition that caused her stomach to fold over on itself and had life-saving surgery to repair it at only two months of age.

Jacqueline fought for her life as an infant and now embraces every challenge that comes her way. She has global developmental delay, severe hypotonia, is profoundly deaf (she wears cochlear implants), is prone to serious respiratory infections that often result in pneumonia, has epilepsy, and was recently diagnosed with a genetic disease mutation of MED13L. Jacqueline is non verbal and uses a wheelchair. School-based therapies and specialized education ensured by IDEA (Individuals with Disabilities Education Act) and FAPE (Free and Appropriate Education) have been a vital part of her growth.

Jacqueline’s mom Pamela says: “We spend a great deal of time advocating to ensure what Jacqueline needs as outlined by law. Losing protections for pre-existing conditions and lifetime caps would have a dramatic negative impact on our family.”

Submitted by Pamela, Jacqueline’s mom

 
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Liliana

Age 7, New York

Meet Liliana, a sweet, smart, hard working, amazing kid. Lily loves to read books, swim, rock climb, giggle, go for walks, and be around people. 

Lily also has Rett syndrome, a neurological disorder that does not appear until 6-18 months of age. Rett Syndrome has robbed Lily of her voice, her ability to use her hands meaningfully, breathe well, walk well, and so many other things – including her independence. Regardless, Lily is the most positive, tenacious, magnificent kid. She is an inspiration to everyone she meets.

Access to affordable, quality health care is critical for Lily. She requires numerous doctor visits, frequent hospitalizations, and 24/7 care.

Lily’s mom Christine says, Having access to Medicaid waiver has changed our lives. It was nearly impossible to pay for all the care she needed/needs, I never had enough help (I’m a single mom who works full time), and I felt completely overwhelmed all the time. Now I have the care we need and it changed both of our lives for the better. If we were to lose Medicaid, I would figure out a way to make it work, but given all the stresses and unknowns with her diagnosis, I would likely get back to the point of almost losing my job again because of all the responsibilities I have outside of work. It is a terrifying thought that I try not to think about.”

Submitted by Christine, Lily’s mother. You can connect with Christine at her blog here.

 
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Holden

Age 3, North Carolina

Meet Holden. He loves rolling “super fast” in his blue wheelchair he affectionately calls “blue blue.” He loves to play with all kinds of toys, especially his Paw Patrol toys and Lego. Holden loves being in water and especially loves doing his aquatic physical therapy. Despite being in a wheelchair, Holden is a typical, rowdy little boy!

Holden was born with stage 3 Neuroblastoma. The massive tumor that took up almost his entire left lung field had grown onto his spinal cord. Due to the location of his tumor, he is paralyzed from T1/T2 down. Holden has flaccid paralysis, requiring AFOs on his lower legs. Because of the location of the tumor and surgical manipulation, he has thoracic scoliosis. He wears a TLSO to prevent further curving until he will undergo surgical correction when older. Holden was intubated for a prolonged time at birth. Due to his prolonged hospitalization, he developed severe GERD and a feeding tube was placed. He currently receives all of his nutrition through his feeding tube. Holden requires a lot of physical support. He has a wheelchair and a stander. He also has a bath seat since he’s unable to sit without both arms supporting him.

Holden’s mom says, "Affordable, quality care should be a basic right for all of us. In my child’s situation, access to care is critical. He has already had so many hospitalizations and surgeries, and at only 3, he has a lifetime ahead of him. Lifetime caps and [removal of protections for people with] pre-existing conditions would rob Holden of access to care, and life sustaining care at that.”

Submitted by Stacy, Holden’s mother


 
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Jonah

Age 10, Virginia

Meet Jonah. Jonah is a big Star Wars fan, alongside his dad and twin brother. He loves Disney music and movies, Taylor Swift and KidzBop songs. Jonah also has multiple diagnosis’ which include: traumatic brain injury, cerebral palsy, epilepsy, cortical vision impairment, chronic lung disease, GERD, and an immunodeficiency disorder. Jonah enjoys going to school and being in his community IDEA protects Jonah’s right to have equal access to a public education. The ADA ensures public spaces are accessible to him and his wheelchair.

Jonah loves to be with is family and Medicaid helps him live at home with them. Jonah’s mom, Michelle says: “Jonah’s medical needs easily exceed the limits of what private insurance is willing to provide. Medicaid provides daily nursing that helps with Jonah’s day-to-day care and allows his parents to have employment. Cuts to important programs like Medicare and a Medicaid will result in children like Jonah – who have multiple disabilities and involved health conditions – losing the freedoms they have now, like living in their own homes and participating in their communities.”

Submitted by Michelle, Jonah’s mother.


 
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James

Age 7, California

Meet James. James loves Transformers. He researches great Transformers battles in his comic books and then re-creates them on the living room floor with his Transformers toys. He just finished first grade in a mainstream class with straight As, earning school recognition for his math and reading scores.  James has a rare skeletal dysplasia with craniofacial complications. He has a permanent tracheostomy (breathing tube) and uses a ventilator at night. He has had a feeding tube since birth, but recently learned to eat some soft foods by mouth.

James’ mom, Jenny, says he is a “lifetime limit” baby: “James spent the first nine months of his life in the hospital. He hit the dollar value that would have been his lifetime limit when he was still an infant, before we ever brought him home from the hospital. We're a middle class family with good, employer-sponsored health insurance, but even our very good insurance had a million dollar lifetime limit prior to the ACA (Affordable Care Act).” 

Submitted by Jenny, James’ mother.




 
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Daphne

Age 14, Maryland

Meet Daphne. She loves music and enjoys playing her keyboard and chimes. She also loves mermaids, and has long, red hair - just like Ariel, from "The Little Mermaid". Her favorite color is purple.

Daphne has Neurofibromatosis (NF1), Moyamoya Disease, epilepsy, and coarctation of the aorta. She is trach/ventilator dependent due to inoperable tumors in her airway. Daphne uses a wheelchair and cannot sit independently.

Accessibility is important to Daphne’s family but sidewalks without curb cuts, inaccessible beaches and even inaccessible nearby playgrounds make it difficult to get around. Her mom says that even public bathrooms are only accessible for those with milder disabilities, and are not accessible for her daughter.

Daphne requires 24-hour care, but her family’s insurance doesn’t cover home health care. Fortunately medicaid covers her home nursing as well as the other things insurance doesn’t cover but Daphne still needs for her entire family to survive and thrive together.

Submitted by Jennifer, Daphne’s mother


 
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Emmett

Age 4, Virginia

Meet Emmett. Emmett is a warm, thoughtful, caring and outgoing kid who makes friends with everyone. He’s excited about everything in the world and his imagination runs wild. He’s brave and daring, sweet and sensitive. He says "I love you" a thousand times a day and gives hugs and kisses “just because.” He loves to learn and go to school and can't wait to grow-up so he can be a doctor and help kids like him.

Emmett has Prune Belly Syndrome, an incredibly rare condition that affects the muscles of his abdomen and kidneys. Because of this, he has chronic kidney disease and had three surgeries before he was two years old to help his kidneys work to their full (but damaged) potential.

His mom Jennie says, “He is truly my hero and the bravest person I know. I look at him and see such a beautiful human that doesn't understand why he has to do things differently from the other kids in his class, but he still does them with grace and such bravery.

The ACA means everything to us. I had the honor of working for President Obama before Emmett was born, so I saw firsthand the amazing protections the ACA put in place once Emmett came along. Emmett will reach his lifetime cap on care in adolescence and has a serious pre-existing condition that could prevent him from getting insurance or care down the road without the ACA.

Emmett knows he is special and has to watch what he eats and make sure he drinks enough water, but he also knows he can accomplish anything he wants and his differences make him extraordinary. The impact Emmett has on people who meet him gives me hope that we'll be able to save the Affordable Care Act. He knows his mom and dad work hard to elect people who want to protect him and help him.”

Submitted by Jennie, Emmett’s mom



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Haley

Age 4, Virginia

Meet Haley. Haley loves books, water, horses, pizza and ice cream (she could eat it for breakfast, lunch, and dinner!). Haley has an awesome spirit – she loves everyone and makes sure you know it.

Haley has Long QT Syndrome (LQTS) Type 3. Hers was a “de novo” genetic mutation, and she is medication dependent. She takes two medications 3x each day, has a pacemaker, and takes an AED with her wherever she goes. Haley's pacemaker implantation caused many complications and extended hospital stays, and she’ll need additional surgeries throughout her life.

Before she was six months old, Haley’s medical bills were more than half a million dollars. Prior to the Affordable Care Act (ACA) that amount would have been half her lifetime limit. Without the other provisions of the ACA, like protecting individuals with pre-existing conditions, Haley’s parents would never be able to switch (or lose) their jobs. Haley’s father’s employer just switched insurance carriers, which has already resulted in more than $1000 extra per year in medical costs for her family.

Submitted by Kaycie, Haley’s mother

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Elijah

Age 4, Georgia

Meet Elijah. His family calls him Super Eli! Elijah is an sweet, intelligent boy who’s tackled every challenge he’s faced. He loves to play with his twin sister, hot wheels and build towers with legos. Elijah and his sister were born at 33 weeks gestation. He was only 2.5 lbs and had several birth “defects” including a malformed airway and incomplete esophagus (esophageal atresia/tracheoesophageal fistula or EA/TEF). After a life-threatening experience with RSV at 8 months Elijah needed a tracheostomy to save his life. It took him awhile to recover and learn to breathe with his new tracheostomy, but 5 months later (at 13 months old) he came home for the first time on a ventilator and feeding tube.

Elijah’s family relies on Medicaid to pay for home nursing, co-pays, and medical transport to out of state appointments. Elijah’s mom Janna says, “Elijah receives 84 hours of nursing per week, mostly during the day so my husband and I can work and sleep on occasion. I’m a chemistry professor – Elijah’s even had some of my previous chemistry students as caregivers in the hospital. My son is very prone to “blue spells,” due to his tracheomalacia. Just the other day, he became so agitated his oxygen desaturated to a 40% level, requiring quick action by myself to resolve the situation. Without rest, I’d be unable to maintain this level of care. Skilled nursing helps us keep Elijah home and out of the hospital as much as possible. If the state cuts Medicaid or if insurers are allowed to have lifetime maximums my son’s healthcare would be in severe jeopardy.” 

Submitted by Janna, Elijah’s mom

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Maisie

Age 5 months, Virginia

Meet Maisie. Maisie recently discovered smiling and now loves to smile, especially in the morning and when her dad makes funny sounds. She loves grabbing her toys on her play gym and going for strolls. She loves being walked around her house to look at the art on the walls.

Maisie spent 88 days in the NICU and the GI floor of the children's hospital before coming home for the first time. She was born with jejunal atresia and her small bowel never developed in utero. Jejunal atresia it is extremely rare, only 3 in 1 million babies are born with the condition and there is no specific cause. Maisie has short bowel syndrome and intestinal failure. She eats a small amount of formula through her g-tube and takes a few tiny bottles each day, but she doesn’t have enough small intestine to absorb the nutrients she needs to live. Therefore, Maisie receives the majority of her nutrients through her central line, a long-term IV in her chest. She’s also in intestinal rehab in an effort to teach her intestines how to adapt to absorb more nutrients. Because the gut is a large part of the immune system, common colds and other illnesses wreak havoc on Maisie's GI system.

Maisie’s mom Sarah says: “Without daily access to IV nutrition and extremely specialized GI care, Maisie would not survive. The expense of her initial hospital stay and her ongoing nutritional needs would quickly surpass any lifetime caps. Programs like institutional Medicaid, Medicaid waivers, and premium payment programs allow our family to focus on her quality of life and development, knowing that the basic care she needs to survive is covered. Maisie can’t attend daycare because they are not allowed to care for her central line. So these programs also allow her dad and I to continue working because we have access to nursing care for her.”

Submitted by Sarah, Maisie’s mom



 
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Connor

Age 10, Virginia

Meet Connor. He is a determined individual, with a capacity for love and humor that overshadows everything else. He loves his family, his friends, his teachers, his therapists and his dog. He is a joyful person with a wonderful sense of humor. He enjoys swimming, kayaking, going to the beach, reading books, his iPad, and Challenger baseball.

Shortly after his birth, Connor began developing medical problems, one after another, starting with failure to thrive, camptodactly, torticollis, plagiocephaply, low muscle tone, a heart defect, seizures, visual disturbances, very weak bones and global developmental delays.

When Connor was 5.5, genetic testing revealed that he had a spontaneous gene mutation in the SMS gene. He was diagnosed with Snyder-Robinson Syndrome (SRS), an ultra-rare genetic disorder. He was the 21st person in the world to be diagnosed with SRS. SRS causes skeletal (osteoporosis, scoliosis, kyphosis) and muscle problems (hypotonia), seizures, developmental delays, and a wide range of other medical issues.

Connor has required physical therapy since he was 4 months old for his hypotonia. He has required many other therapies, including occupational and speech therapy for most of his life. Connor has a seizure disorder. He has vision issues caused by swollen optic nerves and a retinal lesion. He was born with a VSD in his heart. Connor undergoes infusions for his severe osteoporosis. He has suffered a broken skull, a broken arm, and broken feet. 

Connor's team of doctors include a neurologist, ophthalmologist, neuro-ophthalmologist, physical medicine and rehabilitation, orthopedic surgeon, endicronologist, GI doctor, dentist, cardiologist, neuro-geneticist, and others as needed.

Connor’s mom says,Losing protections for pre-existing conditions and no lifetime caps on care provided by the ACA would be devastating to Connor's care. We already pay out of pocket for his physical therapy and cut out the rest of his private therapies to pay for this. For the first 5 years, we paid out of pocket for all of his therapies because the Medicaid providers had lengthy waiting lists. That enabled Connor to gain the ability to walk and to talk, which was not something that was foreseen given his diagnosis. We spent our savings on his therapies. I stopped working outside the home because of his intense therapy and doctor visit schedule. 

Medicaid pays for what our private insurance will not pay for, which includes a lot of the exorbitant costs of the equipment he needs. Hospital visits and costs are covered under Medicaid. Without this protection, we would go bankrupt. With a lifetime cap on care, Connor would not get the care he needs and I am afraid to think of what would happen then.”

Submitted by Katia, Connor’s mom

 
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Declan

Age 3, Virginia

Meet Declan. Declan loves Sesame Street, going to the pool and visiting the park. Declan has Cerebral Palsy, Hypoxic Ischemic Encephalopathy (HIE), and SIADH. Declan is non-ambulatory, non-verbal, needs a trach to breathe, a G-tube for nutrition, and a wheelchair to get around. Despite the odds being against him, he’s very smart and has excelled in many ways.

The Americans with Disabilities Act (ADA) ensures Declan can go places he likes to visit – like the children's museum, library, park, and pool. He can be around other kids, explore new places, have new experiences and learn all kinds of things. Declan has many pre-existing conditions and, if insurers brought them back, he could easily hit a lifetime cap early in life. Fortunately, Declan has a Medicaid waiver which helps him with every aspect of his life. Medicaid helps him get the supplies he needs to eat, take his medicine, breathe, and keep him healthy. He’s able to have regular therapy to help develop skills and can get the equipment he needs to access the world around him (like his wheelchair). Declan can see his doctors whenever he needs to, and can access the constant nursing he needs to maintain his health. 

If there are cuts to Medicaid, Declan's health and developmental future would be at risk. He could not get enough therapy or supplies, his nursing hours could be cut, and he wouldn’t be able to get the equipment he needs to communicate and be part of his community.

Submitted by Amy, Declan’s mom


 
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Henry

Age 3, Ohio

Meet Henry. Henry has a great imagination and a laid back personality. He loves exploring outside, playing in water, and having his super hero toys battle each other. Henry has an undiagnosed disease that causes muscle weakness and developmental delays.

Henry loves to ride the school bus with his two older siblings. Thanks to his IEP (Individualized Education Plan), Henry receives physical therapy, occupational therapy, and speech therapy at school which have been essential to his growth and education.

He requires a ventilator to breathe when he sleeps and uses a feeding tube for all nutrition. He receives 8 hours a day of private duty nursing through his family’s employer-based insurance, and an additional 8 hours a day through his Medicaid waiver, for a total of 16 hours per day. This nursing care is essential for the health of Henry and his family since both his parents work. Prior to the approval of nursing, Henry’s mom and dad were absent from work in an unsustainable manner in order to care for Henry. 

Henry’s mother, Joan says: “Henry's medical bills have already exceeded one million dollars, so losing protections of the Affordable Care Act – ACA (like protection for Henry's pre-existing condition and no lifetime caps on care) would quickly result in financial disaster for his family. There would be an added layer of stress that no parent should have when caring for an adorable medically fragile child.”

Submitted by Joan, Henry’s mother.


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Emerson

Age 7, California

Meet Emerson. Like many second graders, she has lots of friends, loves to read, ride her bike, swim, go to school, ride horses and shop. Unlike most other seven-year-olds, Emerson has cerebral palsy, epilepsy, cortical vision impairment, and chronic lung disease. She can’t walk, talk, sit, or stand without assistance. She uses a wheelchair and needs multiple therapies, a variety of specialized equipment, a g-tube, oxygen and breathing treatments, multiple medications, and multiple specialists to keep her breathing, prevent seizures, and help her continue to survive and thrive.

Emerson’s in the second grade at the CHIME Institute's fully inclusive grade school where she is working at grade level and can learn alongside children of all abilities. She has access to accommodations like specialized equipment, a special ed teacher and general education teacher, OT, PT and VI, a nurse and a paraprofessional 1:1 aide to support her throughout the day medically and educationally. IDEA and FAPE ensure Emerson gets a high quality education just like other kids. The ADA makes sure she can access public spaces in her community, everywhere her family goes has to be pre-planned to ensure wheelchair accessibility.

Emerson’s mom, Dawn says: “Her father and I are both self employed. My business only has two employees and we are hanging onto our PPO insurance plan by a thread through ACA. We supplement with Medi-Cal (California version of Medicaid) which helps cover some costs insurance does not, most notably the LVN nurse who attends school with Emerson and allows her the opportunity to a full education like typical children without medical complexities.

Access to affordable, quality healthcare means everything. Our private insurance opens up the door to so many more specialists, therapists and treatments that would not be covered by Medi-Cal. Likewise, Medi-Cal fills some gaps that private insurance doesn't cover. The two work together in synchronicity to help us give Emerson the best medical and rehabilitative care and help her reach her full potential.”

Submitted by Dawn, Emerson’s mother



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Nathan

Age 8, Ohio

Meet Nathan. Nathan is an AMAZING, handsome, and fun-loving eight-year-old boy. He is a chronically ill child, but he does not let that slow him down. He is hilariously funny and charming. He gets along with everyone he meets and wants to do everything eight-year-old boys do. He is in second grade and his family works hard to keep him in school. He loves watching YouTube videos and cheering on the Cleveland Browns. His family loves playing board games—Nathan always wins! Nathan’s family also loves outdoor activities. Nathan has two dogs, four chickens, one hamster, and three fish. Nathan is a genuinely sweet boy who goes out of his way to help other kids feel welcome and accepted. Nathan’s dad says he could not imagine their life without Nathan. They love living in the Cleveland area, after recently relocating from Southern California.

Nathan from the outside appears to be a typical boy. However, he has a host of medical conditions, stemming from a rare hereditary genetic deletion named 16p-13.11. He also has been diagnosed with Autism, ASD 1. The genetic condition has also caused autonomic dysfunction (dysautonomia) which affects his autonomic nervous function. He also has POTS, and must take a large amount of fluid by G-tube feeding. He was recently diagnosed with epilepsy, and has brief absent seizures that cause nausea that he has been suffering from his whole life but only recently diagnosed. Asthma is also a problem that is controlled through expensive medications. This is a lifelong condition with an unknown future, and his family help him as much as they can, day by day.

Nathan’s dad says, “I am the sole provider of income as my wife is unable to work, because she needs to be available for my son and his many appointments and daily ups and downs. Money is very tight and debt is high, as providing for a child with special needs is financially draining. We want the world for him, but mostly we just want him to have as normal a life as possible. We rely on state aid (here it is called BCMH, Bureau for Children with Medical Handicaps) that covers some medical expenses my insurance doesn’t cover, like co-insurance for diagnostic procedures and doctors visits, and also for treatment for specific diagnoses. This program is very complicated to qualify for. Bottom line is, we would be in serious financial trouble if we lost that little bit of state aid that we qualify for.”

Submitted by Eric, Nathan’s dad




 
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Chantelle

Washington, D.C.

Meet Chantelle, a grown-up Little Lobbyist who recently shared her story with us.

“I'm currently a bilingual paralegal (Spanish-English) at a civil rights legal non-profit. In my free time I organize around wealth redistribution and racial justice, and train other passionate people in how to organize effectively. There are so many other causes that are close to my heart, too, so if there's a protest happening I'm probably there!

I've been diagnosed with VACTERL association, but that doesn't cover everything -- I'm also half-deaf and have a slight speech difference, among other things.

Because my diagnosis isn't clean-cut, and I have a lot of complications, I need access to long-term PT, as well as a host of doctors that include naturopaths, OB-GYNs, PCPs, gastroenterologists, and more. At any moment I'm working with two or more doctors simultaneously to understand the latest symptoms that my body has produced, so having coverage for those visits, tests, and resulting therapies is life-changing. And since these investigations can take years, I need coverage that has no caps or cutoffs.

Access to affordable, quality health care means freedom from fear. It means that I can talk to someone about my confusing medical situation, and feel comforted that, at the very least, I'm not alone in trying to understand what's going on.

Losing the protections of the ACA would not only mean that I would be navigating my situation alone -- it would also mean that I run the risk of not diagnosing something serious and life-changing. It took three years to diagnose a spinal condition that had me in constant Grade-8 pain, and it's taken three years more for me to find a physical therapist who's actually made a dent in that pain. If I didn't have access to that healthcare, I would be in constant pain and in a completely different place in my life.

Because of my spinal difference, as well as other conditions, I often need to sit so that I don't have high levels of pain. The ADA-mandated accommodation of having mandated seats for people with disabilities on buses and trains makes my commute much easier, and means that I don't have to pay top dollar to drive to work or take a car service. Not only does it allow me to get to work more easily, but it also lessens my financial burden.”

Submitted by Chantelle



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Zoey

Age 6, Maryland

Meet Zoey. Someday Zoey hopes to be a famous rockstar. She enjoys karate and is learning to skateboard too! Zoey loves to play and make friends, she has fun wherever she goes! Zoey really enjoys school. Her Individualized Education Plan (IEP) ensures she has accommodations she needs for hearing and vision impairment, and nursing to support her so she won’t miss a thing.

Zoey has Stickler Syndrome which includes Pierre Robin Sequence (PRS). She has a trach and feeding tube due, has difficulty protecting her airway when she swallows and is at risk for aspiration. She’s vision- and hearing-impaired, and also had an adrenal insufficiency.

For Zoey and her family, access to quality healthcare means: getting answers; being able to seek new specialist consultations with ease and no forms or referrals and having her parents’ opinions valued and made part of Zoey’s care plan. Zoey’s mom says, “Zoey needs coverage for pre-existing conditions and protection against lifetime caps. While we hope extended inpatient stays are behind us, we never know how bad the next flu season will be. Vigilant care of her airway is what keeps her healthy and home where she belongs. A Medicaid waiver covers costs excluded from our employer plan, allowing us to use private duty nursing overnight. Medicaid also contributes to the public school system so a nurse can be in the classroom with Zoey, providing a safe environment for Zoey to learn and make friends!”

For children like Zoey, Medicaid, employer-based health insurance, and the Affordable Care Act work together to insure they have the health care they need to thrive.

Submitted by Mary Beth, Zoey’s mom