A YOUNGSTER whose family were told would not live to see his second birthday has inspired more than £50,000 to be raised for research into a rare genetic condition.
Asa Burnside, from Darlington, celebrated his second birthday last month.
But the toddler, who has a devastating neurological disease called Niemann-Pick, now needs daily morphine due to his condition, which has no cure.
He lives with his parents Elizabeth and Joe Burnside and his brother Joe and sisters Elizabeth and Julianna at their home in Haughton, in Darlington.
Read more: Darlington's 'hit squad' looking for new challenges
Uncle Gilbert Maguire, who lives in Hurworth, is planning a 100km walk to raise awareness about the little-known disease and has already raised more than £50,000.
He said: “We never dreamed we would still have him for his second birthday but he’s still here.
“I just want to raise awareness because it is something that is so rare. As a family we know there is nothing we can do to help Asa but if we can help another family or fund research then maybe they can find a cure.”
The condition affects the body's ability to metabolise fats and can damage the brain, nerves, liver, spleen, bone marrow and, in severe cases, lungs.
It is fatal and there is no treatment, other than palliative care.
Asa gets morphine every hour and has had a feeding tube for several months as his muscles are too weak to swallow.
Mr Maguire, who runs Maguires Country Parks, added: “It’s a degenerative condition. He got to the stage where he could say dad and he could hold a bottle but he started regressing when he was about one.
“He’s had a feeding tube for quite a few months now. It’s absolutely awful. You wouldn’t wish it on your worst enemy.
"I’m so proud of how they are doing as a family and that’s one of the reasons I wanted to do the walk. There are families going through this around the world. I just wanted to do something to try and raise awareness."
Mr Maguire will be walking 100 kilometres from Berwick Upon Tweed to Longhorsley in Northumberland within 24 hours.
He plans to set off at about 6am on Saturday, June 18 and hopes to finish by 2am 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 funds research into the condition, and has already raised more than £50,000.
He has been training with Callum and Kez Campbell, from Distinct Performance, Eaglescliffe, and is planning training with members of Geneva Road Evangelical Church, where he attends.
He said: “The support has been absolutely phenomenal. We’ve had donations from friends and family, and people we don’t even know.”
“When things like this happen in life you really question why it happens.
“Putting trust in Jesus is something that has really helped us.”
He added: “Without fundraising there is no research, without research there is no cure and without a cure there is no future. But there is hope. Where there is life, there is always hope.
To donate or find out more visit www.justgiving.com/fundraising/walk4asa?fbclid=IwAR3AkohQNQR6ofzcXFWpDEvMpXuD02oNI0gBFsPMBSXYoTC92YrgSnNoWyE
Keep up to date with all the latest news on our website, or follow us on Facebook, Twitter and Instagram.
You can also follow our dedicated Darlington Facebook page for all the latest in the area by clicking here.
For all the top news updates from right across the region straight to your inbox, sign up to our newsletter here.
Have you got a story for us? Contact our newsdesk on newsdesk@nne.co.uk or contact 01325 505054
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules here