Deacon, age 10 (Ohio)

Meet Deacon. He loves playing baseball, playing video games, volunteering at animal shelters, foster & rescue work with dogs, being a patient champion for children’s hospital, spending time with friends & family, being a big brother, raising money & awareness for heart disease/defects. Deacon may have half a heart, but it’s bigger than most people with whole hearts. He is here to change the world for the better!

Deacon has hypoplastic left heart syndrome, asthma, and acid reflux

Right now everything is controlled by medications. Deacon has had 6 heart surgeries to get us to thus point of “stability”. His heart WILL fail & he WILL go into heart failure requiring a heart transplant. Not an IF a WHEN. We know this is our future. A heart cannot last on the two chamber system Deacon’s surgeons put in place.

Seeing as I myself am on disability, affordable quality insurance means everything to me. I need my health to take care of my son. My son needs access to insurance or it could literally be life & death with him. Strep throat could be a death sentence for my guy. If any little virus gets in him & goes to his bloodstream, that’s it, game over. Quality insurance now keeps everything at bay so we don’t have hospital stays or the transplant sooner than later. Deacon acts & looks like any other healthy 10 year old, I’d like to keep it that way. Yearly checkups with his physician & heart center are crucial to this. Insurance is key. Without programs like Medicaid, families like me are left with no hope. On disability, I barely cover my mortgage, utilities & groceries. Trying to find & pay for insurance on top of that? There’s nothing else I can cut from our budget. I drive my kid around in a car with 200k miles, no cable, no internet, no extras. We live as simple as you can, I have no idea how I’d budget in insurance.

My child is alive because he has Medicaid! That allowed for him to have the doctors, surgeons & care he has always needed. Deacon had 6 heart surgeries before 3 years of age. He has had continued medications since as well as regular doctor checkups. Because of his diagnosis, he even has specialist for simple things like dental care. If he had not had Medicaid coverage, there’s no way I could have afforded his care. By his first surgery at 10 days, he was over the million dollar mark. I’d have lost our house easily. I’m a single mom on disability myself. Medicaid helps me keep my son alive & healthy. Medicaid had given me my best friend to love & watch grow up. Medicaid helps a boy live a normal life where we never thought it would be possible. Medicaid lets a boy with half a heart be on a baseball team with his friends. Medicaid gives my son life.

How would the proposed healthcare bill affect Deacon?

We would not be able to have coverage for quite a bit of the necessary needs of our family. Deacon is pre-existing, he met lifetime bans at 10 days. The current set up with Medicaid is what is keeping my son healthy & safe until heart transplant. I worry about the changes affecting the transplant aspect as well. We have no idea when his heart will fail, it could be next week or next year. We just know it will happen. It’s already going to be difficult to find a donor, I don’t want to think about what insurance hold ups may mean. Can you imagine facing a heart transplant with YOUR child & worrying about insurance & whether you have to get prior authorization or if they’ll approve the procedure? What if there’s another option down the road for him to save HIS heart? Will the insurance allow that? Put yourself in some of our shoes. Come spend a day in our lives & imagine it’s your child. Or spend a day at children’s hospital & watch those kiddos fight. See the worry on parents faces about whether their child is just going to live another day. We shouldn’t have to worry about insurance when we are fighting for our kids’ lives, literally. Thank you for your time. I sincerely hope you reconsider. My kid depends on it.