Man's Northumberland charity walk in response to nephew's rare disease diagnosis raises more than £100k

The uncle of a two-year-old boy with a rare genetic disease has thanked supporters for their “amazing response” to his fundraising walk in Northumberland.

By Andrew Coulson
Thursday, 23rd June 2022, 1:06 pm
Gilbert Maguire with family and other supporters at The Kaims country park.
Gilbert Maguire with family and other supporters at The Kaims country park.

Gilbert Maguire successfully walked 100km within 24 hours in aid of Niemann-Pick UK (NPUK) and more than £100,000 has been donated to the charity so far.

Although he and his family are from the Darlington area, Gilbert runs Maguires Country Parks and he chose a challenging walking route in Northumberland – starting from Ord House near Berwick and finishing at the Forget Me Not site in Longhorsley.

Shortly after his nephew, Asa Burnside, was born, the family were struck with a devastating diagnosis. His parents are Gilbert’s sister Elizabeth and brother-in-law Joe.

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Niemann-Pick Type A affects the body's ability to metabolise fats and can damage the brain, nerves, liver, spleen, bone marrow and, in severe cases, lungs.

It can be fatal and Asa requires morphine each day due to his condition, which has no cure.

Gilbert said: “It was such an emotional, happy day and it was great to see so many family, friends and other supporters during the walk.

“We set off as a group of five and the weather was good for walking. We were delighted that more than 100 people were waiting for us at the stop in Bamburgh (The Kaims) and 70 of them followed us for a while once we started again.

“The final section to Longhorsley was tough as I was feeling it in my legs by that point, but Elizabeth sent me a photo of Asa and it came at the perfect time to remind me of my motivation for doing this walk.

“I expected just a handful of people at the Forget Me Not site as I arrived at 1.30am, but there was a decent sized group and there was a celebratory atmosphere.

“We’re so grateful for the amazing response, both in terms of the number of donations and the number of supporters on the day.”

The total on his online fundraising page – www.justgiving.com/fundraising/walk4asa – is currently more than £104,000.

NPUK chief executive Toni Mathieson said: “We are all amazed and inspired by Gilbert’s efforts in the name of his nephew.

“The funds raised will support much-needed research and help NPUK to continue providing direct support to affected children and their families.”