A Darlington holiday park director is preparing to walk a punishing 100km in a single day to raise awareness of a rare illness from which his nephew suffers.
Gilbert Maguire has already raised a staggering £70,000 to support his bid which will fund research into a genetic condition called Niemann-Pick for which there is no cure.
Gilbert’s nephew, Asa Burnside who also lives near Darlington, needs daily morphine due to his condition, and his parents were told he would not live to see his second birthday.
But the toddler reached that milestone in March this year, and celebrated it with his parents Elizabeth and Joe and his sisters Elizabeth and Julianna.
Gilbert, who is a director of Maguires Country Parks and the uncle of Asa, said that he and his family never dreamed he would still be with them for his second birthday:
“My aim now is to raise awareness of this condition, and though there is nothing we can do for Asa there is the hope that research could eventually find a cure,” he said.
“The disease is fatal and there is no treatment, other than palliative care. Asa gets morphine every hour, and has a feeding tube as his muscles are too weak to swallow.
“It’s an absolutely awful condition, but I’m so proud of how they are coping as a family – and that’s one of the reasons I wanted to do this fundraising walk.
“The support I’ve received has been absolutely phenomenal, and the donations have come from both friends and family, and many more people we don’t even know,” said Gilbert.
He will be walking 100 kilometres from Berwick Upon Tweed to Longhorsley in Northumberland within 24 hours, starting at 6.00am on Saturday 18 June.
If all goes well, Gilbert hopes to finish by 2.00am the following day.
The money raised will go to Newmann-Pick UK (NPUK) which provides support for people living with or affected by the disease, and also funds research into the condition.
He has been preparing with the help of fitness trainers Distinct Performance, and with members of Geneva Road Evangelical Church, where he attends.
Maguires Country Parks today owns eight popular top-end parks in northern England, and was founded 40 years ago by the Maguire family.
To find out more about Gilbert’s challenge, or to donate, visit www.justgiving.com/fundraising/walk4asa?fbclid=IwAR3AkohQNQR6ofzcXFWpDEvMpXuD02oNI0gBFsPMBSXYoTC92YrgSnNoWyE
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