Newburn brain injury teen rewrites medical history after seven year wait for diagnosis

Teenager Ryan Thompson is battling a brain disease so rare that he is the only child in the world to have it.

Medics were left baffled by the condition - known as CNS scleroderma - which causes seizures and affects Ryans speech.

The syndrome is often diagnosed in peoples 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, as the North Easts leading paediatric neurologists research the disease, Ryan, of Newburn, Newcastle, is beginning to write his own medical history.

Leading paediatric neurologist Rob Forsyth - who has spent years researching Ryans condition - believes they have now getting on top of it thanks to vital research.

At the age of six Ryan fell in the school playground and he was taken to the former Newcastle General Hospital for treatment.

Ryan Thompson, 14, from Newburn with his mum Deanne

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 wouldnt work there would be nothing more they could do.

Its not what you want to hear as a parent. If it wasnt cancer and it was something else, we just always kept hope.

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Newburn brain injury teen rewrites medical history after seven year wait for diagnosis