Age 12, Maryland

Meet Simon. Simon has a great sense of humor and the best laugh you’ve ever heard. He loves music, the Muppets, playing Mario Kart with his big sister, having “sleepovers” with his Dad, 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, testing (inpatient and outpatient), medical equipment, frequent appointments with various specialists, surgeries, neuropsychological evaluations, specialized education, and therapies.

Simon’s mom Laura says: “The ACA protects us from losing health care and/or going bankrupt despite Simon's multiple pre-existing conditions and the increasing cost of his care. Though he's been on a Medicaid waiting list for 8 years, after he ages out of our insurance, Medicaid will be Simon’s only option to get the medical care and community support he needs.

Last year, Simon was selected to participate in NIH’s Undiagnosed Diseases Program. We’re hoping to learn more about Simon’s condition and help advance the science of genetic medicine to benefit everyone. Seeing truly collaborative and coordinated research and care unencumbered by the sometimes arbitrary limitations of insurance at NIH 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