Hi. I am a foster mum to a lad with CHARGE who I hope to adopt one day. He is nearly two and, as we live in cornwall and he has had all the typical health complications, we have not had chance to meet with any other children or families affected by CHARGE. He is profoundly deaf and visually impaired but can see. He seems very distant and in his own little world most of the time. Is not really interested in people around him at all. He makes minimal eye contact and is happy left with his own company. He is also not yet sitting and is mobile by shuffling around on his side. He is only fed via gastrostomy and not keen on having tastes yet. As i have not met any other children with CHARGE i have no idea if this is normal. Will he sit, walk, talk, eat or ever interact with adults? I have heard of a few others that are now doing some of these things but am aware there is a wide range of severities. I am assuming he is a fairly severe case but really am not sure. It would be really great to meet some other families if any ever visit cornwall???
Louise