Dominic was diagnosed with a rare syndrome called CHARGE. CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in family histories, as in the case of Bill and Deanna.
CHARGE 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, including complex heart defects and breathing problems. 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 which delay their development and communication.
Taylor is 10 years old with CHARGE syndrome and very independent. He is deaf and mute, but uses sign language to commnicate. He attends a deaf school and is learning to participate in activities like any typical child.
Alex is 8 years old with Charge Syndrome, cerebral palsy, hydrocephalus, 1 kidney, cleft palate and lip, a shunt and is deaf, blind and mute. We are unable to communicate with him at all. He has had over 50 surgeries and cannot swallow. He is fed through a feeding tube and his stomach does not drain so it is emptied into a container outside of his stomach. He has the mentality of a 1- 2 year old. Alex does not walk. He rolls to where he wants to go or is carried or taken in a wheelchair. He has seizures and suffers from sudden death syndrome as well.
For more information on CHARGE Syndrome, please visit http://www.chargesyndrome.org/
Alex
Taylor
CHARGE Syndrome
Dominic's Friends with CHARGE
