When Shari and Brian Silver welcomed their son Justin into the world, they were over the moon, as any new parents would be. But as Justin grew, his development was delayed, and it was clear something was wrong. Doctors struggled with a diagnosis based on his behavior—similar to autism, but not quite. The diagnosis of Fragile X Syndrome came only after a grand mal seizure at 4½, that Justin thankfully recovered from.
photos provided by the Silver family
This genetic condition is simple to test for, and the Silvers were frustrated that multiple doctors knew nothing of it and didn’t consider testing. They found few resources to educate themselves, until finding hope with the experts at Boston’s Children’s Hospital Fragile X Clinic, and then to University of California, Davis’ MIND Institute in Sacramento, the premier diagnostic and care clinic for Fragile X Syndrome. The sense of relief was immense, as the Silvers recall: “There, we were understood and educated. We would walk away with an invaluable road map for helping our child and a link to a community few understood. We also learned about the extensive and promising research being done. With the road map, we now had hope for our child’s future, a future that upon diagnosis looked bleak and sad.”
Fragile X clinics made a positive difference in Justin’s life, and the Silver family was inspired to create the non-profit Fly With Me Fund to support families in a similar situation who may not have access to appropriate, accurate medical care in an understanding environment. As they say on their site: “Every family living with Fragile X Syndrome should understand their child and should have hope.” To date, they have provided this hope through over $300,000 in donations, hundreds of families assisted with medical care, therapies, travel to one of the 28 Fragile X clinics across the country, and new medical research equipment.
The vision of the Fly With Me Fund is to make sure all kids like Justin are able to access early identification methods and effective treatment, giving families hope and healing. We applaud their dedication to paying forward the opportunities they had to others! PLAE-it-forward by using code GIVE680 at checkout, and PLAE will donate 10% of your purchase to the Fly With Me Fund and National Fragile X Foundation in support of research, awareness, and treatment. Shop now to earn a donation.