Niemann-Pick disease: Darlington man's charity walk plan raises £60,000

Asa Burnside has been diagnosed with the incurable Niemann-Pick disease Type A

A Darlington man aims to walk 62 miles (100km) in one day as he raises thousands of pounds for research into a rare and incurable condition affecting his young nephew.

Two-year-old Asa Burnside has a degenerative condition called Niemann-Pick disease Type A.

The toddler now requires morphine each day to lessen the pain of his symptoms.

His uncle, Gilbert Maguire, aims to walk from Berwick to Longhorsley, in Northumberland, in June.

Niemann-Pick disease appears during infancy and is caused by an accumulation of lipids, or fats, in the liver, brain and spleen.

Mr Maguire has so far raised more than £60,000 in aid of the charity Niemann-Pick UK and he hopes he will have reached £100,000 by the day of the walk on Saturday 18 June.

'Final stages'

"Up until his first birthday, Asa was hitting his normal milestones and engaging with his family," Mr Maguire told BBC Radio Tees.

"Then he started to regress and we saw the symptoms kicking in. He's had to have a tube in his nose so he could be fed.

"Since then, with his organs enlarging more and more, he's having breathing difficulties and he's now on morphine for the pain it's causing.

"He's obviously got neurological problems as well, which is one of the final stages of Niemann-Pick A."

Gilbert Maguire aims to raise £100,000 for research into his nephew's disease

Mr Maguire said the donations pledged via JustGiving, alongside messages of support and kindness for Asa and his parents, Elizabeth and Joe, had been "phenomenal".

"There are many, many people who have never heard of it. It's a horrible disease and a horrible thing for any family to go through," he said.

"It would be great if we could help another family by funding research to one day find a cure."