CHARGE Syndrome???

[mama2peyton]

hi

Edited by mama2peyton - 11/10/10 at 9:55am

[BookGoddess]

I have a friend who has a high school age son with the syndrome. He's hearing impaired and his sight is also impaired. He's mainstreamed in school with a lot of supports.

If you'd like I'll ask her for some links to websites and groups. I know she's involved with a CHARGE group and she goes to their convention regularly.

[lactationlady]

http://www.chargesyndrome.org/index.asp is a great source of information. They have a great New Parent Pack that they send out that is full of info. They also have a really strong support network.

My youngest dd has Kabuki Syndrome and there are a lot if similarities between the two syndromes. In fact, Kabuki Syndrome is sometimes misdiagnosed as CHARGE, so there are many parents on the KS yahoo group who also use the CHARGE resources.

[mama2peyton]

hi

Edited by mama2peyton - 11/10/10 at 9:55am

[bender]

I've met a few adults with Charge syndrome. One was an older lady who seemed very sweet, but my ASL skills were lacking so I couldn't talk with her as much as I wanted. The other person I met was a college student at my university, and she was doing well with her classes. Her vision and hearing were decreasing at that point, but she had artsy-crafty hobbies and could use the computer quite well.

[gloriasimo1963]

Hi I want to know the conduct of a junior with15 years old that have this condition?