Rylee's road to fund a life changing Gene Therapy
Rylee lives with an ultra-rare neurodevelopmental genetic disorder FBXO11. This condition affects how her brain processes and clears proteins, impacting nearly every aspect of her development and daily functioning. Because FBXO11 is so rare, there is very little information about what the future holds or what milestones she may or may not achieve. When she was diagnosed, there were only 84 known cases worldwide.
About Rylee's Road
Rylee’s journey has been full of challenges, but also of remarkable strength, resilience, and the brightest smiles. Living with her ultra-rare FBXO11 genetic disorder means facing obstacles most families never have to imagine. Rylee needs oxygen whenever she sleeps, relies on a feeding tube for all of her nutrition, and experiences significant developmental delays. She works hard in weekly therapies to build skills many children develop naturally, while also attending countless medical appointments with specialists who help manage her complex needs. Because FBXO11 is so rare, many of the doctors we’ve met had never encountered the condition before meeting Rylee. For years, there were no treatment options—only supportive care and uncertainty about what the future would hold. Today, for the first time, there is hope. A dedicated medical team has been researching the possibility of gene therapy that could dramatically improve Rylee’s quality of life and change the course of her future. But because this condition affects so few children worldwide, there is no government or pharmaceutical funding to support this research and treatment. The cost is overwhelming, but with the support of our community, we have the chance to help give Rylee a future that once seemed impossible. Every donation, every share, and every act of kindness brings us one step closer to giving Rylee that chance. Thank you for being part of her journey