Isaac's Story: The Two Million Dollar Baby
Isaac blew through his lifetime cap before he was even a year old. Medicaid saved his life, and keeps him thriving.
By Kim Crawley
My name is Kim Crawley. I live in Ashburn, Virginia, with my two youngest children, Elijah and Isaac, and our dog Daisy. I’m a high school teacher who specializes in special education. I love my job although sometimes it feels like I can never escape teenagers!
Isaac is 16 and extremely funny, with a sarcastic streak that usually stays on the right side of the line. He’s a huge fan of all things WWE, anime, and Marvel; he has shelf after shelf of figurines and a huge, very lively friend group. Our house tends to be the hangout house, whether kids are watching movies or working on homework. (Isaac’s favorite class is history.)
His younger brother Elijah has ADHD and he is 13 going on 30. He’s an incredibly strong academic and really excels at math. Like his brother, he tends to be the life of the party and he loves being outdoors with his friends when he’s not playing video games.
Isaac has autism and a rare condition called esophageal atresia. He was born missing the majority of his esophagus and has needed countless surgeries to rebuild it, place the g-tube he relies upon for nutrition, and address other medical issues. Until he was 12, he needed a tracheostomy to breathe; getting to take that out was huge for his independence and our family, since he no longer needs 24/7 nursing care and attention to monitor his airway.
As you might imagine, Isaac racked up some pretty serious medical bills in his first year of life, which he spent mostly in hospitals; three months of that time was spent in medically-induced sleep while they worked on growing a new esophagus for him. When he was 15 months old, he lost his primary insurance because he hit the two-million-dollar lifetime cap. This happened literally overnight; I called his medical equipment supply company to find out why a shipment was delayed and they told me we didn’t have insurance.
A social worker at the hospital told me that because of his prolonged hospitalizations and medical needs, he would qualify for Medicaid. It was a program I never thought I would need, but Medicaid is why he’s with us today. Medicaid allowed him to go to school, where in addition to being an incredibly strong student, he gets the speech, occupational, and physical therapies he needs to live to his full potential. Medicaid covers his medical supplies and doctor visits, including the visits he needs to manage his rare disorders.
A day in the life for Isaac, he explains, starts with waking up and doing a nebulizer treatment while he wears a special vest that helps him cough and shake things loose in his lungs. He has breakfast through his g-tube and then heads to school, where he plays with his friends, goes to class, and takes care of medical needs he has on his own — the nurse’s office keeps the supplies he needs. After school, he rides his scooter, plays games like Mario Kart, and spends time with Daisy. Isaac wants to go to college, although he’s not sure where he wants to go yet.
“I think a lot of people will not be able to do anything” without Medicaid, Isaac says. That includes his activism for the Affordable Care Act and Medicaid.
This program is essential for him and millions of children across America. I didn’t even know about all Medicaid had to offer and how important Medicaid is until Isaac lost his insurance coverage. You don’t realize that it could happen to you until it does. And it’s hard to trust what other people say about programs like Medicaid: People tell me that Isaac’s care won’t be cut, but I know that the home and community-based services he needs will actually be first on the chopping block. When the state starts cutting Medicaid because it loses federal funding, Isaac is going to be the one facing these cuts.
It's so important to me that people listen to each other and talk to people who have experienced these things firsthand so we can learn from people who have been there and avoid huge, life-altering mistakes. Allowing these massive cuts to Medicaid would be one of the biggest mistakes we ever make.