My son Cody was born with CHARGE Syndrome. Most people have never heard about this syndrome, so I have posted the following information from http://www.chargesyndrome.org/
CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. 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. 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.One of the hidden features of CHARGE syndrome is the determination and strong character these children display.
History of the Name "CHARGE"
The name "CHARGE" was a clever way (in 1981) to refer to a newly recognized cluster of features seen in a number of children. Over the years, it has become clear that CHARGE is indeed a syndrome and at least one gene causing CHARGE syndrome has been discovered. The letters in CHARGE stand for-
Coloboma of the eye,
Atresia of the choanae,
Retardation of growth and/or development,
Genital and/or urinary abnormalities, and
Ear abnormalities and deafness.
No one feature is required to make a diagnosis of CHARGE. Every feature varies from severe to absent in different children.
If you would like more information or to donate, please go to http://www.chargesyndrome.org/