CHARGE syndrome is a recognizable genetic syndrome with known pattern of features. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. Babies with CHARGE syndrome are often born with life-threatening birth defects. They spend many 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 that delay their development and communication. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.
He spent 4 months in Children's NICU, he has had 10 surgeries. He had a tracheostomy tube for 2.5 years because of his inability to swallow. His main struggle right now is swallowing and balance issues-- and he needs to have open heart surgery to correct an atrial septal defect this month. I think some of the common issues effecting CHARGE kiddos are hearing/ vision issues (deaf, hard of hearing) and blindness, heart defects, growth restriction, poor tone, and difficulty swallowing, and balance issues due to inner ear differences. Isaiah is blind in his left eye and is hard of hearing. He loves horse back riding, LEGOS and his brothers. Thank you so much Erica for helping to raise awareness about CHARGE and other rare conditions.
Isaiah is such a Brave Little Warrior!! We are honored to be able to share his story and help bring awareness about CHARGE syndrome.