I'm all finished. Time to get off and go to bed.
Sunday, June 15, 2008
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What is CHARGE???
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.
2 comments:
Wonderful new bike!! Enjoy it all summer!!
Hugs,
Crystal and Eva
Looks like you are having fun on your tricycle, Evan!
Sarah, thanks for the link to that article you sent. I've never heard of that syndrome before, but several of the symptoms sure sound a lot like Katie! I'm going to take the article to our next neurology appointment and see if her neurologist thinks it might be a possibility. It sounds like he might be able to tell just from looking at her EEG results.
Leslie
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