03/09/2023
While CHARGE syndrome is a relatively rare syndrome, affecting one in every 9-10,000 births, it is the leading genetic cause of deaf-blindness. Babies born with CHARGE syndrome often have complex heart defects, serious breathing problems and difficulty eating. They can spend months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations. For more detailed information about CHARGE syndrome, please go to the Foundation website at www.chargesyndrome.org.
Our family knows CHARGE very well. Michael and all three of our children have CHARGE Syndrome, which is even more rare to have 3 Children with the syndrome. The Foundation provides much-needed research, education, outreach, and support. The Foundation is the largest organization dedicated solely to individuals with CHARGE, their families and the professionals who serve them. Our family wants to help the Foundation continue to fund research, provide educational materials, host conferences, and so much more. This organization has a positive impact on our daily lives, and we want to do everything possible to give back. Please help us support the Foundation.
