THE family of a toddler with a rare and incurable genetic condition has raised more than £100,000 in his name.

Two-year-old Asa Burnside, from Darlington, has a neurological disease called Niemann-Pick, which means his body cannot metabolise fats.

Gilbert Maguire, his uncle, walked 100 kilometres this weekend to raise awareness about the little-known fatal condition – raising more than £100,000 in the process.

Little Asa, who lives in Haughton with mum Elizabeth, dad Joe, brother Joe and sisters Elizabeth and Julianna, was well enough to meet up with the group at the half way point – helping spur them on to the finish.

Read more: Darlington man to walk 100km for nephew with rare genetic disorder

The Northern Echo:

Mr Maguire, who lives in Hurworth, was joined for different parts of the walk by more than 100 people.

Setting off in the early hours of Saturday, it took him 21 hours and 26 minutes to walk just over 100km from Berwick to Longhorsley in Northumberland.

Alongside him for the whole route was friend and coach Callum Campbell, from Distinct Performance gym in Eaglescliffe.

The Northern Echo:

And at around the halfway point, near Bamburgh, about 100 people met up with the group for food and to join the walk.

While some joined for a short period, others walked upwards of 40km.

Mr Maguire, whose family runs Maguires Country Parks, said: “It was absolutely phenomenal the support and messages I had on the day.

“When we set off from Bamburgh there were about 100 of us – grandparents, friends, children. It was amazing.

“I absolutely couldn’t have done it without every single person who came and supported it. It was an emotional rollercoaster of a day. The pain at the end was killing me but Elizabeth sent me a picture of Asa and that kept me going.

“It’s a day we’ll remember forever. We all achieved it together and raised the money together. I just hope and pray that we can help find a cure one day. We can’t save Asa but maybe we can help to save another child.”

The Northern Echo:

He added: “It was great Asa could be there. When we planned it we didn’t think in a million years he would be there but he had a good day.”

After completing the walk, he added:  “I’m not as bad as I thought I was going to be. I didn’t really have any blisters and my feet aren’t swollen. I’m a bit stiff and sore but not what I was expecting at all.”

On Sunday, Mr Maguire, who is a member of Geneva Road Evangelical Church, had raised about £103,000.

The Northern Echo: Gilbert Maguire and nephew Asa Burnside Gilbert Maguire and nephew Asa Burnside

The Northern Echo: Some of the walkers on Saturday Some of the walkers on Saturday

The money will be donated to  Niemann-Pick UK (NPUK), which provides support and care for those living with the disease and is trying to progress treatments and medical research into it.

The disease is uncurable and has no treatment beyond palliative care. Children with the condition rarely have a life expectancy of more than three years. 

To visit his fundraising page visit his page

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