Adam was delivered by C-section at 41 week and no problems were noted, he came to ward with me. He unlike every other baby however did not sleep much, he screamed and screamed it was heart breaking. At three months he wasn't holding his head and didn't show response to sound and was so unsettled. He was diagnosed as profoundly deaf in both ears and was given hearing aids. He then stopped eating and drinking at four months he was admitted to the John Radcliffe hospital and put on a drip, he had so many test done as they could see something was no right, he lost a few of the skills he had and MRI's of his brain showed deterioration of his white matter in each scan. He also has a thin corpus callosum, sever all over epilepsy, unsafe swallow high risk of aspiration, due to being wheelchair bound and dustonic his body is deterating, he's developed scoliosis and recently went through foot surgery to prevent his feet becoming more disfigured, it was really hard on him and after his surgery complications led Adam to a dystonia crisis. A year round and his surgery has failed and his poor feet are in an awful state. This is due to the strength of his dystonia. He struggles every day, but gets through life happy and generally settled. He has an amazing character and has shown us so much. He's had every test you could imagine to give us a formal diagnosis but 11 years on we still have no answers.