Niemann-Pick disease: Darlington man's charity walk raises £100,000

Gilbert Maguire was cheered on by Niemann-Pick UK chief executive Toni Mathieson

Niemann-Pick UK Gilbert Maguire alongside chief executive Toni Mathieson — Gilbert Maguire was cheered on by Niemann-Pick UK chief executive Toni Mathieson

A man raising funds for research into an incurable condition affecting his young nephew has smashed his £100,000 target with a 100km (62-mile) walk.

Gilbert Maguire, of Darlington, took on the challenge in aid of Asa Burnside, two, who has a degenerative condition called Niemann-Pick disease Type A.

The funds will also go to the charity Niemann-Pick UK.

The walk, in Northumberland, started in Berwick on Saturday and finished at Longhorsley at 01:30 BST.

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

Toddler Asa is given morphine each day to lessen the pain of his symptoms.

Mr Maguire said Asa's symptoms have become more severe over the past two years

Family handout Gilbert Maguire playing with nephew, Asa Burnside, in a swimming pool — Mr Maguire said Asa's symptoms have become more severe over the past two years

Speaking part-way through his challenge, Mr Maguire told BBC Radio Tees he had been "marching through" and "keeping a good pace" helped by cool weather and having friends and family alongside him.

"Asa was diagnosed not long after he was born. There's no cure or treatment, but we thought we need to try to help.

"We initially thought we could raise a few thousand pounds for families and the charity Niemann-Pick UK, but within a couple of hours [of launching an online JustGiving appeal] it was at £5,000 then £10,000 and jumped up to £25,000.

"It's phenomenal how quickly it went. As it kept creeping up, I thought as I'm walking 100km wouldn't it be great to raise £100,000 and we've now got there."

The walk took in the Northumberland coastline and places including Bamburgh, Seahouses, Beadnell and Warkworth.

Mr Maguire previously told the BBC that as Asa's symptoms have progressed he has had to have a tube inserted in his nose to feed him and he has also developed neurological problems.