Hello Gemma.
My name is Lesley, i live in London. I have a little girl called Ruby she is 2years and 5months old now. I was reading your message last night and just wanted to let you know that i know how you are feeling. Ruby was diagonsed with Charge a few days after she was born, they did carry out a blood test and we got the results about 9 months later, by this time we were very sure ourselves that this is what she had it didn't really make any difference when the doctor confirmed it.
Since finding out i have meet quite a few people who's children have Charge, it isn't as rare as i first thought.
The only support group that i am aware of is this one, and i think that Yahoo has a Charge Group that goes all over the world. Have you got an organisation called SENSE near you? They can help with deaf/blind people, i have found them really helpful and supportive in so many different ways.If you look them up on the web you should find a head office number, hopefully they can help you with a local SENSE group.
I know that it doesn,t seem possible at the moment, but things do get better slowly and children with Charge are very slow at doing anything they do things in their own time. Ruby isn't walking or crawling yet she shuffles everywhere. She is floppy also but this has improved a great deal. She is her own person and knows what she wants and what she doesn't want and is sure to let you know! She has got quite a temper but is a wonderful little girl.
Once again, i know what you are feeling but please try and remember that things will get better for you it just doesn't seem like it at the moment. Take one day at a time.

Best wishes
Lesley.x