Pride of Britain: Meet Gilbert Maguire who walked 100 miles to raise awareness of rare disease

Gilbert Maguire's 2-year-old nephew, Asa, has Niemann-Pick, an incurable disease which means his body can not break down fats and they are stored in his lungs and brain. Credit: Family photo

A Darlington man has been nominated for a Pride of Britain award after raising awareness of his nephew's rare disease by walking 100 miles in 22 hours.

Gilbert Maguire did the fundraising walk along the Northumberland coast last June and has since raised more than £100,000 for research into the disease.

Mr Maguire's two-year-old nephew, Asa, has Niemann-Pick, an incurable disease which means his body can not break down fats and they are stored in his lungs and brain.

  • Video report by Katie Cole.

Mr Maguire said: "Until he was one he was doing all the things a baby should do and reaching all his milestones.

"Once he was one he started to regress and show more symptoms, a swollen belly, eating problems, and now he is in the final stages where he has got neurological problems as well.

"It has just been a massive reality check for all of us to see what he is going through. To see what's important in life.

"There is no cure for it, no trial drugs and I wanted to raise some awareness of it and get it out there more and try and do something that was positive in Asa's name."

Asa, has Niemann-Pick, an incurable disease which means his body can not break down fats and they're stored in his lungs and brain. Credit: Family photo

Mr Maguire's original goal was to raise £2,000 for charity-funded research into Niemann-Pick.

However he has since raised more than £100,000.

Mr Macguire's has raised more than £100,000 for Niemann-Pick awareness. Credit: ITV Tyne Tees News

He said: "It just went up and up and we had donations from Canada, America, Australia and we have ended up raising more than £100,000. I think we are nearly £110,000 now.

"We just never thought in our wildest dreams we'd raise that much or have that impact. He is definitely a special, loved boy."

Gilbert Maguire walked 100 miles in 22 hours along the Northumberland coast. Credit: Family photo

Joe Burnside, Asa's father, said: "You've got to be a certain kind of person to do this. It's not something I could do myself personally.

"It is a moving thing what he has done. It has been a very emotional thing what he has done.

"For us as a family, it has been very, very good. "

Ton Mathieson, from Niemann-Pick UK, said: "It is hugely significant for us the amount of money raised by one person in the name of his nephew.

"ASMD is relentless. It ruins families lives.

"Gilbert has done an outstanding job and it will make a huge difference for us."

Ton Mathieson from Niemann-Pick UK said the money raised is hugely significant. Credit: ITV Tyne Tees News

Mr Maguire's efforts have inspired others in his community to fundraise and the total keeps going up. 

He said: "I just never expected in my wildest dreams to be sat here today talking about this.

"I am just a person who did a walk and I am trying to do my little bit and raise some awareness and show some love. That is all I was doing."

Gilbert Maguire said seeing his nephew’s impact on everyone’s lives fills him full of love. Credit: Family photo

He added: "I am just so proud when you see him and the impact he has had on our life.

"It just fills you full of love."

The regional Fundraiser of the Year Award will be announced on Friday 30 September and the winner will attend the Pride of Britain ceremony in London.

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