We are the proud parents of Caden, our three year old warrior who faces the world with strength and joy, despite the rare challenges life has thrown his way. Caden is affected by CTNNB1 Syndrome, a neurodevelopmental disorder so rare that only 400 children worldwide have been diagnosed. This condition impacts every aspect of his life—his ability to walk, talk, think, and see. Like many children with CTNNB1, Caden also battles FEVR, a rare eye disease that affects the blood vessels in his retinas. This disease has already caused irreversible blindness in his left eye, and the progressive nature of the disease threatens his right eye as well.
For families like ours, this journey is filled with uncertainty. CTNNB1 Syndrome was considered "too rare to care" by many researchers and pharmaceutical companies. But through CTNNB1 Connect & Cure, we’ve found a community of parents who refuse to let their children’s futures be defined by rarity. Together, we’re funding groundbreaking research, drug development, and gene therapy that could change the course of this disorder, giving Caden and children like him a chance at a brighter tomorrow.
We created Caden’s Dragonfly Donation page because we believe in the power of community and the impact of small acts of generosity. By contributing to this page, you’re not just supporting Caden—you’re helping fund the research and treatments that give hope to all children living with CTNNB1 Syndrome. Every donation, no matter the size, brings us one step closer to life-changing breakthroughs. Join us in creating a better future for Caden and others like him. Together, we can make the impossible possible.
