Gilbert Maguire will be taking on the huge challenge of attempting to walk 100km in just 24 hours on Saturday in aid of Niemann-Pick UK (NPUK).
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.
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.
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It can be fatal and Asa requires morphine each day due to his condition, which has no cure.
Although the family are from the Darlington area, Gilbert runs Maguires Country Parks and he has chosen a challenging walking route between two of the parks.
He will start from Ord House near Berwick and the finish point is the Forget Me Not site in Longhorsley.
Gilbert has already raised well over £70,000 via his online fundraising page – www.justgiving.com/fundraising/walk4asa
A spokesman for NPUK said: “The family have learned just how important it is to appreciate the smallest things and cherish every precious moment life gives.
“Facing such bleak and uncertain times, Gilbert has thrown himself into shining a light on this rare disease and raising funds for our charity, which is focused on helping children the Asa and their families.
“The money he is raising will hugely contribute to the provision of expert support and facilitate much-needed research into this devastating disease.”