Simon

Age 14, Maryland

Meet Simon. Simon has a great sense of humor and the best laugh you’ve ever heard. He loves music (especially the drums), the Muppets, playing Mario Kart with his big sister, and hanging out with his Little Lobbyist friends. Simon had a stroke in utero which caused diffuse brain damage, cerebral palsy, hydrocephalus, and a rare form of epilepsy. He had his first brain surgery at only 2 weeks old to place a VP shunt. A few years ago, Simon began losing vision, hearing, cognitive ability, and gross motor skills. After lots of testing his family learned he has a unique genetic disorder with an unknown prognosis. Simon's current needs include: medications, medical equipment, frequent appointments with various specialists, surgeries, neuropsychological evaluations, specialized education, and multiple therapies.

Simon’s mom Laura says: “The Affordable Care Act is an incredibly important piece of legislation for my family’s well-being. As a small business owner, I rely upon the the ACA’s insurance marketplace to purchase health care for my entire family (all of whom have pre-existing conditions). Through the ACA’s Medicaid Expansion, Simon is also able to benefit from a Medicaid Waiver, after being on a waiting list for 10 years. Simon’s Medicaid Waiver not only helps him access the health care he needs (which my family has struggled to afford), but it provides home and community based services so Simon has the supports he needs to be successful in his own environment as he grows into adulthood. It’s not hyperbolic to say that Simon’s life, future, and freedoms rely on Medicaid’s support.

In 2018, Simon was selected to participate in NIH’s Undiagnosed Diseases Program. Through this program, we were able to learn more about Simon’s condition and help to advance the science of genetic medicine to benefit everyone. At NIH, having the opportunity to see truly collaborative and coordinated research and care unencumbered by the frequently arbitrary limitations of insurance has been a revelation – I feel like we’ve gotten a glimpse of how incredible our country’s health, science, and technology could be if we fully invested in it as a nation.”  

Submitted by Laura Hatcher, Simon’s mother