Hi,
My son was born with CHARGE syndrome 16years ago, it is a fairly mild form and he is doing well. He is 6ft,3' but his upper body is very narrow and his muscle structure does not look quite right. He has bi-lateral choanal atresia, surgery was not successful, we gave up after the 5th try. He has dextra cardia, only one kidney, no belly button due to hernai repairs, a mid-lying spleen, only one vas deferens and a mild case of spina bifida occulta. He is also deaf in one ear but has 70% in the other. With special schooling he is at Grade level for his age. I would life to hear form anyone with older children similar to Patrick.
Thanks and God bless,
Fionnuala