Meet Rylee
Born on August 22, 2025, Rylee is a bright light in our lives with an amazing smile that can illuminate the darkest room. She is a resilient and an amazing girl, facing her journey with a spirit that inspires everyone she meets. Rylee has an ultra-rare genetic condition so rare that it doesn't even have its own name - it's known only by the affected gene, FBXO11. As of 2024, there are only 84 known cases worldwide.
At such a young age, Rylee is already a warrior, facing every challenge with a quiet bravery that leaves us in awe. She dedicates her days to various therapy sessions, working with a level of grit and persistence that is truly extraordinary for such a young child. Every small reached milestone is a hard-fought victory won through her incredible effort. Alongside her, big sister Addy provides constant encouragement, cheering on Rylee's tireless work as she fights for a brighter and stronger future.
Understanding FBXO11
For children like Rylee, the path to a healthy life starts with understanding the complex challenges they face. FBXO11-related neurodevelopmental disorder is an ultra-rare genetic condition caused by a change (variant) in the FBXO11 gene. This gene plays an important role in helping cells regulate and recycle proteins that are essential for normal brain development and function. When the gene does not work properly, the brain cannot develop and communicate with the body as it should, leading to a wide range of developmental and medical challenges. Most cases occur de novo, meaning the genetic change happens at conception and is not inherited from either parent. This condition impacts how a child grows, affecting speech, movement, and physical strength. While the obstacles are significant, our community remains motivated by hope. Advancements in gene therapy represent more than medical progress; they are true lifelines providing a path toward a brighter future and the vital care these children deserve.