Brain injury teen rewrites medical history after seven year wait for diagnosis

It is believed that Ryan Thompson is the only child in the world to have the condition.

The 14-year-old is battling the disease CNS scleroderma which causes seizures and affects Ryan’s speech. The syndrome is often diagnosed in people’s legs and arms but only a handful of adults in the entire world suffer from it in the brain and it is believed the 14-year-old could be the only child to have it. Now the teenager from Newburn, Tyne and Wear  is helping North East’s leading paediatric neurologists research the condition by writing his own medical history. At the age of six Ryan fell in the school playground and he was taken to the former Newcastle General Hospital for treatment. Medics originally thought that he could have a brain tumour but a diagnosis was finally made more than seven years later. His mum Deanne, 37, who works in recruitment, said: “My world fell apart at that point. At first they thought it might be a brain tumour. They said that if the treatment wouldn’t work there would be nothing more they could do. “It’s not what you want to hear as a parent. If it wasn’t cancer and it was something else, we just always kept hope. “We have now lived with it for so long - people just can’t believe it but we’ve just got to get on with it. She added: “Deanne said: “Looking at Ryan you would think he was healthy but what he has is so unique. “We hope that Ryan can help other children who suffer from the same thing in the future, which would be brilliant.”  Read the full story. 
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