In late June 2011, our daughter Claire, a beautiful 14 month old little girl with curly blonde hair and bright blue eyes was diagnosed with Rett Syndrome –a rare and devastating neurodevelopmental disorder that condemns 1 in every 20,000 little girls to an entire lifetime of challenges. Like Claire, these girls are born just like most others and develop normally until 12-18 months of age when they suddenly begin to lose acquired skills. They are robbed of their ability to speak, walk, and use their arms and hands – requiring 24/7 care.
‘Silent angels’, as they’re often referred, continue to develop mentally only to be trapped by their inability to communicate. As they grow older, these girls struggle with disrupted sleep patterns, breathing disorders, scoliosis, fragile bones, seizures, digestive disorders and heart problems, even suffering sudden death.
Rett Syndrome currently has no cure and there are no treatments. Medicine can offer only supportive measures such as feeding tubes, orthopedic braces and surgeries, and trials of standard seizure medications which are often ineffective. However, hope is not lost.
After learning of Claire’s diagnosis, we immediately committed ourselves to doing everything we could to improve the quality of life of all silent angels as they battle Rett Syndrome. Together, with Claire as our inspiration and driving force, we founded Claire’s Crusade –a 501(c)(3) non-profit tax exempt organization dedicated to raising funds for treatment of this debilitating disorder and to support cutting edge research efforts to develop a cure. Claire’s Crusade is committed to increasing awareness and providing resources for families faced with the uncertainty this affliction can bring.
Join us as we continue to fight!
- Sean & Colleen Reilly