Mum goes that extra 100 miles in charity walk for brave Alfie
Event will help fund boy’s treatment in US for muscle-wasting condition
A WOMAN from Co Down is walking 100 miles in just three days to help raise funds for her son to aid his battle against a muscle-wasting disease.
Alfie Pentony (8) from Newry was diagnosed with Duchenne muscular dystrophy (DMD) in November 2016 after complaining of constant pain in his legs.
DMD has a life expectatancy of 29.
Alfie’s parents Colleen and Jamie searched all over the world for trials to help combat the condition, and he was accepted on to one in New York last year.
The trial costs $35,000 (£27,900) each time the family visits. Next month will be their fifth trip.
The Pentonys are no strangers to fundraising through their Fight For Alfie campaign, a charity aimed at helping him and other children with DMD.
Alfie walked the distance of a marathon last summer in a separate fundraiser and now his mum will walk from Co Fermanagh’s Stairway to Heaven on Cuilcagh Mountain to Newry City AFC’S Showgrounds stadium between April 9 and 11. Colleen explained the treatment in the US was improving Alfie’s condition, but the prognosis was still not good.
“There’s eight of us doing the walk — myself, friends and committee members from Fight For Alfie,” she said.
“It’s to raise funds for Alfie and other children to receive treatment that’s in America. Alfie is still terminally ill. A lot of people think he’s all right now, but he’s not.
“We’re buying time with this treatment but that’s all we’re doing.
“This is the biggest challenge I have done yet. None of us are athletes that are doing this. We’re staying in a campervan in between each day.
“The whole point of it is to save Alfie and other children fighting this disease. It’s no distance at all to me if it’s going to save Alfie.”
As part of the American study, St Malachy’s Primary School pupil Alfie must spend three hours a day in a hypobaric chamber, which strengthens his muscles.
Outlining the real progress her son has made in just 12 months, Colleen added: “The trial is making a massive difference because his Duchenne specialists in America couldn’t get over how well he’s doing, which is amazing.
“I brought him up Camlough Mountain and he did struggle a bit — his uncle carried him a lot — but he managed most of it himself. There was a stage he could never in a million years have managed that.”
Looking ahead to her challenge, Colleen said she hoped Alfie can join her for some of the 100-mile walk, and even though it will be challenging, it will be worth it.
“It’s thousands of dollars for each infusion before we even book flights and accommodation,” she said.
“Usually we would be in and out of New York in five days but Covid means we have to stay there for two weeks and then quarantine for two weeks when we come home.
“Last year Jamie and Alfie went on their own and our family was completely split every time he had to take him.”
For more information on Colleen’s fundraiser and the Fight For Alfie campaign, search ‘Fight-for-alfie’ on Facebook or visit www.fightforalfie.co.uk
‘The trial is making a massive difference... his specialists in the US are delighted’