Newspaper article Evening Chronicle (Newcastle, England)

A Condition So Rare He Could Be Only Child in the World with It

Newspaper article Evening Chronicle (Newcastle, England)

A Condition So Rare He Could Be Only Child in the World with It

Article excerpt

Byline: Katie Davies Chief Reporter

TEENAGER Ryan Thompson is battling a brain disease so rare 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 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, as the North East's 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 Ryan's condition - believes they are now getting on top of it through research.

At six Ryan fell in the school playground and he was taken to the 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 nothwork there would be nothing more they could do. "It's not what you want to hear as a parent. If it "It's not what you want 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.

"We just don't lose faith in the system and Ryan is my everything."

Following the diagnosis Ryan was prescribed several types of different medications before neurologists made a recent breakthrough.

Ryan, a pupil at Walbottle Campus, is working closely with professionals from Child Brain Research (CBR) - a unique charity ran by children's neurology doctors from the UK's leading hospitals.

He is now part of an international study involving teams in North America and Europe that CBR has helped set up in the UK.

And it is hoped Ryan's case can help other people in the world who are diagnosed with CNS scleroderma in the future. …

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