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