A MAN suffering from an extremely rare illness for which there is no cure is hoping to raise awareness of the condition.

James Smith, 27, of Spennymoor, suffers from Wolfram Syndrome, a rare genetic discorder. 

The illness is so rare that only 100 people in the UK have been diagnosed with the problem. Sufferers have a life expectancy of 30 years.

As a result of his condition,  Mr Smith suffers from two types of diabetes and is losing his sight. He also has depression, seizures, choking bouts and bladder problems.

He lives with his mother, Kim Williams, on Low Grange Road, and they both support the Wolfram Syndrome UK charity.

Mrs Williams, 52, who has two daughters Claire Smith and Keely Brown, said there was no family history of the illness.

She said: “Not many people know much about the illness and we’re trying to raise awareness.

“I knew from a young age that something wasn’t quite right with James. He was about seven-years-old when he started to lose a lot of weight.

“He went to hospital and they found out that he was diabetic.

“In 2000 when James was 12 he was poorly and he was in Bishop Auckland Hospital for a few weeks and the doctors there told us about Wolfram Syndrome.

“I’m so proud of him. When he was in intensive care and I almost lost him my heart broke as my children are my world.”

Professor Tim Barrett, of Birmingham Children’s Hospital, was the only doctor at the time to have dealt with the sufferers of the illness and he provided help.

Unfortunately James then spent time in intensive care in Newcastle’s Royal Victoria Infirmary last May where Dr Steve Ball, who had some knowledge of the illness, gave help too.

Mr Smith, a voluntary helper at the Butterwick Hospice, in Bishop Auckland, takes tablets and insulin for his illness.

He said: “I just make the most of each day. I try not to think about what might happen and I carry on as best as I can.”

Shoppers in Asda, Spennymoor, can vote for Wolfram Syndrome UK as one of three charities hoping to secure financial support from the store.

Mr Smith is to hold Wolfram Syndrome awareness days at the Asda on Friday, March 21 and Saturday, March 22.

To donate to the charity contact Mrs Williams on 01388-241619 or visit wolframsyndrome.co.uk/