Grace was born a preemie at 31 weeks gestation and we found out she had CHARGE syndrome a few days after birth with the help of a geneticist. This was in 2001, before we had genetic testing for CHARGE available. She had a trach, a feeding tube, and 2 surgeries for her choanal atresia before leaving the hospital over 3 months after birth. Most recently she had jaw surgery to move her upper and lower arcades to align her teeth after 2 years in braces. She was a champ through this ordeal. She is going to be 23 years old and we sometimes forget what we all went through in those earlier years. She is outgoing and loves to make people laugh. She has accomplished so many things we never thought she would be able to do. She now attends a special college program that allows her to be with her peers with supports and has met such amazing people and has made wonderful friends. She also has a strong friend group at home that she developed through school and local programs.
What would you like to tell other people about CHARGE syndrome?
CHARGE syndrome is a diagnosis, but it does not define our children. They all are affected differently and will develop at their own pace. They are tough and resilient. It is a scary journey for families at times, but there is a large support network through the CHARGE Syndrome Foundation including parents and professionals that we must take advantage of and support. -Caroline, Grace’s Mom
