Daily Mirror (Northern Ireland)
Parents’ hope for miracle US trial in child’s health battle
Life-changing treatment costs family £40k a year
A GROUNDBREAKING US trial has given two parents renewed hope for their eight-year-old son who suffers from a rare, life-shortening condition.
Jamie and Colleen Pentony, from Newry, said they were shocked to discover little Alfie had the incurable condition Duchenne Muscular Dystrophy (DMD) when he was only four years old.
DMD is a genetic disease which causes muscle wastage and leaves those suffering from it with a dramatically shortened life expectancy of just 21 years.
Determined to do all they could to help their boy, the couple managed to secure him a place on a groundbreaking US trial.
And over the past year Alfie has made the journey to New York every three months to get a life changing compound – Jar 914 – at the Salerno Center for Complementary Medicine.
Jamie, 41, told the Daily Mirror: “This is not a cure - it’s just buying time.
“In the 200 years since the discovery of the disease not one single child has ever survived it. Not one.
“When he gets an infusion – you have to do it four times a year – that wears off after the three months and he has to get redosed to keep the muscles moving.
“It seems to be working. We are happy with the progress.”
Jamie added: “Every time he goes and gets an infusion we get his muscles tested. Last year he improved his muscles strength by 82%.
“The life expectancy is 21, but that’s not for everybody, it’s the average. It’s getting better but it is still scaring me and scaring his mummy.”
Jamie said his son wasn’t able to make it up and down stairs before the treatment started and is now “running up and down the stairs and he’s only after climbing Camlough Mountain”.
EXPECTANCY
But he warned that “although Alfie is doing very well, people think we have fixed him but we are far from that”.
Colleen added: “Say this treatment stopped in the morning, God knows where Alfie would be a year down the line.”
Alfie started his treatment in January 2020 and since then the family used their knowhow and connections to help get two Downpatrick brothers also on the
trial.
The Newry lad is due back in the US for his next infusion in two weeks and in a bid to keep the treatment going for him and the other boys the family has set up a charity to raise much-needed funds.
Colleen said: “At the start we helped Alfie, but now we want to be able to help more children. We know what this disease can do and there’s other people out there.”
“She knows every doctor under the sun and their email addresses and their phone numbers,” added Jamie.
In a bid to ensure Alfie and the Downpatrick brothers, Brody and Cooper Pedan, can continue their treatment, the charity Fight-for-alfie has organised a 100-mile fundraising walk.
Colleen said: “To keep doing what we are doing, we need the support.
“The treatments cost around £40,000 a year - that’s not including your accommodation and your flights and all.
“These infusions are buying us time by slowing the progression of the disease.”
It’s getting better but it’s still scaring me and it’s still scaring his mother JAMIE PENTONY ON HIS SON ALFIE’S LIFE EXPECTANCY