MORE than £12,000 has been raised for research into a young boy’s rare life-limiting illness.

Darwen youngster Nolan James-Crook, 12, was diagnosed in 2013 with H-abc, a degenerative brain condition which results in the progressive decline of white matter in the brain.

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Last year his parents Naomi and John, with the help of friends and family, began trying to raise funds to help find a cure for the condition.

There is currently no treatment available as very little is known about it.

Now £12,556 has been sent off to doctors in Philadelphia to try to help fund research into it.

Mrs James-Crook said she was ‘over the moon’ that fundraising had gone beyond expectations.

She said: “It is amazing how generous people have been.

“As this disease is so rare, research does not get funding like it does with some other conditions.

“It means a lot that people have given so much of their time to help us, it will make such a difference to all the parents and children affected by H-abc.

“It has given us a ray of hope.

“I was hoping to raise about half of what we have done so it really has exceeded expectations.”

Money has been raised through a variety of events such as a monster truck push day at the Victoria pub and friends and family doing triathlons, bike rides and Tough Mudder challenges.

Mrs James-Crook said: “I would just like to thank everyone who has put in their time to raise funds, especially Emma Whittaker at the Victoria who really gave us a platform to get the message out to others.”

When Nolan was diagnosed only 22 other people in the world were thought to suffer from the same condition.

However this has since increased after doctors discovered the gene that was causing the problem, making it easier to diagnose people.

H-abc is an abbreviation of Hypomyelination with atrophy of basal ganglia and cerebellum, which causes movement difficulties and a delay in mental development or learning problems.

But despite being confined to a wheelchair permanently, Nolan’s mum is still enjoying life.

She said: “He is still really enjoying doing wheelchair football.”