Hi,

My son has yet to be diagnosed with charge syndrome but since he was born all his nurses were convinced it is charge.
He has copious amounts of secretions, cleft lip/palate. vsd (now repaired), micropenis, severe hearing loss, coloboma in both eyes, malformed ear,horseshoe kidney, missing thymus gland and a right facial nerve palsy.

The genetics team ruled out Charge syndrome purely on the basis he didnt have coloboma of the eyes (ridicilous considering he has all other symptoms) - but low and behold we have just found out he does have the eye condition after all. So still battling with them to test him for charge.

Alex is 9 months old but wears 0-3 mths clothes, cannot sit up and does not have full head control as yet. But he does play wonderfully with toys and just starting laughing and really smiling.

Just wondering what the future has in store with regards to walking, going to school i.e is mainstream school adequate enough?

Just some hope and advice, or to meet mums in my area. I live in Southport, Merseyside.

Lisa