Dear all,
I hope you don't mind me posting on here. I am not a mother of a child with Charge syndrome neither do I have charge syndrome. I admire you all so very much, my Godson was born with charge syndrome, a very severe case and very unfortunatly, at the age of 6 weeks he died at Great Ormond Street Hospital. This was just over 8 years ago. He was such a brave little boy but had he lived, we were told, he would not have had any life at all. Tests showed he would be deaf and blind, he had 3 holes in his heart, 1 kidney and that wasn't functioning as it should. The list goes on and on.
What I'm trying to say is to congratulate all of you and your children on your bravery and to cherrish your children as it's obvious you do. Jamie I was so proud to know you, and even prouder to be your Godmother. God bless and sleep tight,
Aunty Ann
P.S I hope I didn't offend or upset anyone. Thank you.