Anna

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.

Submitted by Anna’s mother, Angie

Melanie

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

Pierce

Pierce

Age 4, Maryland

Meet Pierce. Pierce is three 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

Timmy
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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 was born 2 months premature with cerebral palsy. He had a life and death situation during birth. It started with hypoglycemia and pneumothorax then respiratory failure from weak lungs. He needed a chest tube and was on a ventilator right after his birth. He then “coded” multiple times from cardiac tamponade and needed emergency drainage of the fluid from around his heart. The medical team was able to keep him alive. He developed hypoxic brain injury from all the events and developed severe cerebral palsy, periventricular leukomalacia, seizure disorder, legal blindness, and severe global developmental delay.

Aadi needs total care and full assistance with feeding, sitting, standing, and personal hygiene. He suffers from seizures once in a while, and receives follow-up care from a neurologist. He also gets frequent ear and respiratory infections.

Aadi recently got accepted into North Carolina’s CAP/C waiver program and with this waiver he was also able to get Medicaid. We are really grateful to be living in North Carolina as Aadi will now have access to a nurse aide and various other quality services under this CAP/C waiver program, which is basically covered by Medicaid. Just having employer sponsored private health insurance is not enough to cover the medical bills incurred during care of a medically fragile child.

Budgetary cuts in Medicaid mean Aadi will be denied of all the healthcare access through CAP/C, and could even mean CAP/C waiver program going away. I can’t even imagine the horrible situation that Aadi and many other medically fragile kids will have to face with the proposed changes. 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 will have to continue taking care of our child. So it’s a lose-lose situation for everybody!!!!!

Submitted by Dipendra, Aadi’s father

Xiomara

Xiomara

Age 3, 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, Pulmonary Hypertension, Pulmonary Vein Stenosis, 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 healthcare 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 preexisting conditions are reinstated, she would 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

Simon

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 isn't currently on Medicaid, his school is able to provide 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 will also provide support for the vital programs 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

Jack

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 $58k 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 12, Texas

Meet Victor. He loves going to school with his friends and playing Miracle League Baseball on the weekends. He's a big fan of all types of music and especially likes when others dance with him. He laughs a lot when his younger brother gets into trouble and he loves to swing and attend social events whenever possible. When the weather is good, he loves to be outside taking in a stroll around the neighborhood or even using his special tricycle.

VICTOR’S DIAGNOSES: He has no known syndrome. In fact, at birth he was deemed "typical". However, seizures developed rapidly at the age of 10 days and a full Epilepsy diagnoses was given at 12 weeks of age when he had a long lasting convulsive status seizure. Following this, he was diagnosed with Infantile Spasms-- the worse seizure diagnosis for an infant, whereby he had upwards of 50 seizures per day. Cerebral palsy, cortical vision impairment, scoliosis, reflux, restrictive lung disease, spastic quadriplegia, non-verbal, and cognitive delay are also among his many diagnoses.

WHAT DOES ACCESS TO AFFORDABLE QUALITY HEALTHCARE MEAN TO YOU?  Affordable quality healthcare to me, is the difference between life or death and owning our home or going bankrupt! Healthcare is a human right and a moral obligation to support LIFE and cherish every second of it while it exists.

HOW HAS THE ACA AND/OR MEDICAID HELPED YOU?  Prior to the ACA, when Victor was an infant, we spent many hours and sleepless nights in the hospital. With all of the heartache we went through, I still paid the bills and read every Insurance EOB. Our lifetime limit was $2millon. At the age of 2, Victor's tab showed he had reached over $600k. I worried constantly about how we'd survive this. I also saw things coming in mentioning pre-existing condition. I used to wonder, "does that mean before he was born?" we had no idea about his medical concerns during pregnancy.

Then came the ACA and my worries went away! He remained on a waitlist for 8 years before obtaining a Medicaid waiver. We were very lucky to have an amazing policy through my husband's employer all those years, so we made due. Then, Victor's name finally came up and Medicaid was granted. It was a Godsend! At that time, I had my 2nd child and was no longer working so knowing that we also had Medicaid alleviated much of the financial burden.

Shortly after receiving that Medicaid waiver, we relocated out of State. We had to reapply all over again and not every State is the same. Thankfully, Victor was accepted into the Medicaid waiver program and at a time when we needed it because my husband's job situation changed. With the worry of caring for our boys while both unemployed, we were grateful that Victor had Medicaid--his health concerns became greater and even endured a spinal fusion surgery. There is no doubt that Medicaid has helped us offset his high medical costs but it has helped tax-payers for years as we've cared for our son, in our home and not run up larger bills if he were otherwise forced in an institution.

HOW WOULD MEDICAID CUTS AND/OR ROLLBACK OF ACA PROTECTIONS AFFECT VICTOR?  I dread the thought of this! If the current proposed bill moves ahead with drastic cuts or even elimination to Medicaid, we would go bankrupt and while we don't ever plan to place our beautiful boy anywhere else but our home, this bill could literally force a choice upon us that no parent wants to make!

Victor's 2016 medical expenses alone cost over $600K! A little more than half of that was paid through our private insurance and Medicaid picked up the bulk of the remaining portion. Without Medicaid we would have had to pay over $300k! Who can cover costs like this annually? ---NOT the average hardworking American!

As a 1st time mother and especially of a medically fragile child, I struggled with so many things in those early days--all of the doctor visits, missed milestones, inability to socialize the way we would have normally, going to the store without stares to my baby boy, giving him emergency rectal seizure medication nearly on a daily basis--it was all so horrible. I refer to those days as our “Dark Days”.

I didn't want to share everything about my son back then. I was jealous of other families with typical babies and sad for my boy, myself and my husband. Then, one day I somehow got stronger. I accepted every bit of it and when people asked me the most personal questions that I couldn't freely answer during the Dark Days, I began to answer most of them and then began to share our story.

I discovered as the Little Lobbyists have, that sharing my story adds value to our communities because we can learn by our experiences and that of others. Sharing our stories is what helps create CHANGE and we must continue to strive for everything better. I will never stop fighting for my son and others like him!

Submitted by Laura, Victor’s mother

Jack

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."