Cleft and di george disease

[DLP]

my son a view months ago had an operation for his cleft palatte, found out he has di george disease. after we were told, that was it - no more contact with the specialist nurse for over a month now.

anyone else have a child with a cleft of di george disease?

i don't know anyone to chat with about the future

Hi dlp, my sister knows someone who has a child with Di George. I don't see her that often, but when I next do, I will ask her of any info/support groups if that will be any help to you?

Good luck and best wishes.

My x has a brother with Di deorge and a cleft palatte, he is 20 now, i can tell you about him, fwiw. Not much help i know,not really in contact with the family much now or i would introduce you.

thank you for your support moderatorlou33 and fairyfly

I have asked a few questions on here and they were lovely to me, perhaps this will be of more help here
It was advertised in Pendlebury Childrens Hospital

DLP - the max appeal site which FF has posted is very good. There are also a couple of Yahoo groups which I'll try to find for you.

Can I just say - please don't get too worried by the long list of di George markers - there are about 190 and many children only have a few and are mildly affected. Where are you being treated? Some hospitals have di George clinics that you can ask to be referred to.