THE parents of a young boy with an incredibly rare life-limiting illness are desperately trying to raise funds to find a cure for his condition.
Eleven-year-old Nolan James-Crook, was diagnosed in 2013 with H-abc, a degenerative brain condition which results in the progressive decline of the white matter in the brain.
Doctors have told the Darwen youngster’s parents Naomi and John, there is no known cure for the condition simply because very little known about it.
When Nolan, was diagnosed only 22 other people in the world were thought to suffer from the same condition.
Naomi said: “Nolan is a cheeky little boy who does not take life too seriously.
“He is a sociable character with lots of friends and he never ever lets his condition get him down.
“We are very hopeful that there is an answer out there for him.”
During a trip to America, hope for Nolan emerged when a team of doctors in Washington DC said they were ‘confident’ that a cure could be found if some research could be funded.
Naomi said: “Doctors in America seemed confident that they would be able to find a treatment or cure.
“It would mean the world to us and would be a great relief to find some answers and to give Nolan a better shot at life.
“He has always made sure he has stayed active despite being confined to a wheelchair and enjoys playing wheelchair football and bocchia.
“He is a huge fan of Bolton Wanderers and makes sure he gets to every home game.
“He is also into motorbikes and cars as well. He’s a lovely boy and we are so proud of him.”
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.
These symptoms occur because some brain cells in sufferers are not fully covered by myelin, a substance that usually surrounds nerve cells to help them work better.
The condition also causes the breakdown of two parts of the brain that help to coordinate movement, the basal ganglia and cerebellum.
The Darwen Aldridge Community Academy student has already attracted celebrity attention when he met Stone Roses star Ian Brown.
The singer donated some signed merchandise from himself and the band to auction off for the research fund.
Tomorrow (Easter Sunday), there will also be a huge event in Darwen to try and raise cash for the groundbreaking research.
The Victoria pub will be hosting a monster truck push day at 11am as well as a number of other activities including face painting, pony rides, balloon art and table top sales.
Naomi is urging as many people as possible to get to the event ‘not just’ for Nolan but for ‘future generations that may struggle with H-abc’.
She said: “We have had some fantastic support from everybody. It’s been really nice.
“I want to thank everyone who has helped and donated to the cause so far.
“Raising this money will not just bring Nolan some hope but it will ensure that this unknown disease will have some more information available if research can be done.”
Brendan Loughran, headteacher at DACA, said that Nolan was a great character and hoped the town would pull together to help a ‘fantastic’ student.
He said: “Nolan has a fantastic sense of humour and is incredibly popular across all year groups.
“He loves his PE lessons and has been part of the medal winning boccia team for us.
“He’s a fantastic student and we are proud to have him as part of Darwen Aldridge Community Academy.”