Alfie runs the distance of a marathon at age 7 to fund breakthrough US treatment for his illness
A PRIMARY school pupil from Co Down is running the length of a marathon to raise funds for his battle against a muscle wasting disease.
Alfie Pentony (7) from Newry was diagnosed with Duchenne muscular dystrophy (DMD) in November 2016 after complaining of constant pain in his legs.
His mum and dad Colleen and Jamie have searched far and wide for trials to help combat DMD, which can cut life expectancy to around 20 years.
Alfie was accepted on to the HBOT JAR914 study in New York and has travelled twice already this year to take part in the self-funded trial. He is due to go to the Big Apple for more infusion treatments again next month.
Four other children are involved in the study, which costs $35,000 (£27,900) each time they visit.
The Pentony family are no strangers to fundraising initiatives, but this time Alfie felt the urge to run his own marathon.
With the help of brothers Lucas (8) and Jamie (4), Alfie has been doing laps of Newry’s Barcroft and Jennings Park football pitches since last Monday.
Colleen said that Alfie should not be able to run with his condition, but it has proven how the treatment has worked for him so far.
“He should be relying on his wheelchair more and more, but Alfie is the opposite,” she said.
“About six-and-a-half laps of the pitch is a mile. On Tuesday night he wanted to do more, but it was raining and we wanted him to slow down a wee bit.
“He has people cheering him on when he does it and loves the attention.
“He needs to do 170 laps to do a marathon, and with the way he’s going I don’t know how long it’ll take him because he’s flying.
“When you look at Alfie’s Fitbit, he does 10,000 steps daily anyway. If he takes his wee breaks in between his laps he’s fine after he sits down.”
As part of his daily routine the St Malachy’s Primary pupil takes up to 15 tablets every morning, does his necessary stretches, and spends three hours in a hypobaric chamber as part of the American study.
The chamber allows oxygen to enter his body and strengthen his muscles. Colleen said the difference the treatment has made in Alfie’s life has been phenomenal.
“When you watch him running around the field you couldn’t be prouder of him in seeing how well he has come on,” she added.
“He’s fighting back and Duchenne is not going to beat him. It annoys him every day that he has to go into the chamber. He’s not a normal wee boy, he’s fighting all the time. He has to take his tablets, he has to go in the chamber and he has to do his stretches every day.
“He just doesn’t get a break and it’s not easy on him, but at least it’s keeping him out of his wheelchair.”
The trial will continue until 2021, and due to Covid-19 Alfie and his family will spend three weeks in New York next month rather than seven days.
Luckily he got to see some of the city in January before the lockdown.
“We took him round the first time because he loves Home Alone, so we took him into the
Plaza Hotel,” Colleen explained. “We brought him to Central Park so he could see where Ghostbusters was filmed and all that, but he just wanted it over and done with.
“The treatment makes him very, very tired when he first gets it. He’s exhausted for two days and then he starts to pick up. I wouldn’t go back down the route of looking at other treatments. This isn’t a cure, but this is to slow the monster down.
“I would prefer to stick with this trial until they are more advanced in knowing how to deal with Duchenne.”
To follow Alfie’s marathon progress or donate, visit the Fight-for-alfie Facebook page.