Our story
Refusing to Accept “Impossible”
In 2011, our son William was diagnosed with Spinal Muscular Atrophy Type 1 at just two months old. At the time, families like ours were told to prepare for the worst, with little in the way of treatment or hope. William refused to let that diagnosis define him. He lived boldly and adventurously, in every way his condition would allow, until he passed away in 2019.
Four years after William’s diagnosis, our daughter Mary was born and diagnosed with SMA at birth. This time, the landscape had begun to shift. Mary became one of the first infants enrolled in a groundbreaking clinical trial — and because of that early access to treatment, she has grown up able to walk, talk, eat, and breathe on her own. Today she’s a sassy middle schooler who twirls a baton and still participates in clinical trials to help push research further for the families who come after her.
Along the way, our family — Beth, William, and Mary — helped lead the effort to add SMA to the newborn screening panel. Because of that work, every baby born in the United States is now tested for SMA at birth. Combined with early treatment, that screening gives babies diagnosed today a chance at the kind of life Mary has been able to live.
