CHARGE - SYNDROME

 
"With complete medical support and good therapy these children can survive the initial and most difficult years very well.  Depending on the intensity of their disability they can live a self-sufficient and independent life - We are even aware of some cases of university students with CHARGE syndrome!" -
Ruan and Tina de Flamingh
more pictures    

More information about the CHARGE Syndrome - see below

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 “One of the hidden features of CHARGE syndrome is the determination and strong character these children display.”

 
C oloboma of the eye
H eart defects
A tresia of the choanae
R etardation of growth and/or development
G enital and/or urinary abnormalities
E ar abnormalities and deafness 
 
 

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.

 
(Information taken from www.chargesyndrome.org and www.charge-syndrom.de

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Characteristics of CHARGE Syndrome

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.

 
Charge children are able to develop according to their abilities like all other children do if they get the chance to do so.  This is the reason why the earlier educational experts are involved in their development, the better it is for them even if the medical problems and physical disabilties seem to be more important at that stage.
 

For any queries - CONTACT us!

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