In the News: Rylee’s Story
Rylee’s journey and our family's fight for gene therapy have been featured in local media outlets, helping us share her story and raise awareness for ultra-rare genetic conditions.
Cambridge Today
In a recent CambridgeToday feature, the Harding family shared Rylee's journey with FBXO11-related neurodevelopmental disorder, an ultra-rare genetic condition that few physicians have ever encountered. The article highlights both the daily challenges and the hope that drives their search for future treatment options. Through it all, Rylee continues to inspire her family with her strength, determination, and infectious smile. As her mother explains,“She keeps working, she tries really hard,” and adds that Rylee's smile is what helps carry them through the toughest days.
Waterloo Region Record
The Record tells the story of a family's fight for hope. After their daughter Rylee was diagnosed with an ultra-rare FBXO11-related genetic disorder, Grant and Kris Harding launched an ambitious fundraising campaign to pursue a potentially life-changing gene therapy. Faced with a treatment cost exceeding $2 million, they have turned to their community for support, determined to give Rylee every chance to thrive. Inspired by her resilience and unwavering smile, the family continues to raise awareness, funds, and hope for a future that once seemed out of reach.
CTV Kitchener
Featured on CTV News Kitchener, Rylee Harding's story showcases a family's unwavering determination to pursue a groundbreaking gene therapy that could transform her life. Living with an ultra-rare FBXO11-related disorder, Rylee faces significant daily challenges, but her strength and perseverance continue to inspire everyone around her. The Harding family is now rallying community support to help fund research and treatment efforts, bringing hope not only to Rylee but to families around the world facing similar diagnoses.