Jace’s Journey: Living with NF1
In 2019, our world shifted when our son, Jace, was diagnosed with Neurofibromatosis Type 1 (NF1) at just three years old. Like many parents, we had dreams for our child—watching him grow, play, and experience all the joys of childhood. But with his diagnosis came a reality we never expected: a life filled with medical appointments, uncertainty, and an unwavering determination to give Jace the best possible future.
The Diagnosis
It started with small signs—things that didn’t seem significant on their own. Café-au-lait spots on his skin, developmental delays, and some unexplained challenges. After rounds of tests and doctor visits, we heard the words “Neurofibromatosis Type 1.” A genetic disorder that affects 1 in 3,000 people, NF1 can cause tumors to grow along the nerves, affecting the skin, bones, and sometimes even the brain. Every case is different, and no one can predict exactly how the disorder will progress.
A Team of 26
From that moment, we entered a world we never imagined—one filled with specialists, MRIs, nerve tests, and constant monitoring. Jace is followed by an incredible team of 26 doctors at the Cleveland Clinic, each one dedicated to a different part of his care. Neurology, oncology, orthopedics, ophthalmology—the list goes on. We’ve lost count of how many waiting rooms we’ve sat in, the number of scans he’s had, and the nights we’ve spent worrying about what’s next.
Strength Beyond Measure
Despite everything, Jace is resilient. He faces each challenge with a strength far beyond his years. He’s an athlete, playing hockey as a goalie—a position that requires quick reflexes, courage, and determination. Watching him on the ice, you wouldn’t know the battles he fights off the rink. He inspires us every single day.
Why We Walk
Our journey with NF1 is ongoing, and that’s why we are committed to Steps2Cure NF—raising awareness and funds to support research and better treatments for families like ours. There is no cure for NF1, but with continued research and advocacy, we hold on to hope for better options and a brighter future for Jace and the countless others living with this condition.
Every step we take, every doctor’s visit, and every challenge we face is part of Jace’s story—a story of courage, love, and perseverance. We share it not for sympathy, but to spread awareness, to encourage understanding, and to remind others facing similar battles that they are not alone.
If you’d like to support Jace and others like him, please consider joining us in Steps2Cure NF or making a donation. Every bit helps in the fight for a cure.