‘My baby boy Alfie will die unless we find a cure for this cruel disease’

Eight-year-old Alfie Pentony was diagnosed with DMD almost four years ago. The condition is a form of muscular dystrophy that is caused by a gene mutation and is the most frequently occurring and one of the most rapidly progressive childhood neuromuscular disorders. Due to the way DMD is inherited, boys are primarily affected.

Alfie’s dad, Jamie, said: “DMD will likely take my son before his 21st birthday. In the 200 years since the discovery of the disease not one single child has ever survived it. Not one.”

Mr Pentony is chairman of a Newry-based registered charity called Fight-for-Alfie, which is dedicated to raising awareness and funding research to find a cure for DMD.

“Alfie has been receiving life changing infusions every three months in New York,” said Mr Pentony.

“These infusions are buying us time by slowing the progression of the disease, but come at a massive cost that we really, really need help with, The truth is that once the boys become confined to a wheelchair, the doctors and scientists tell me that his body will never recover, that his body will be so ravaged by scar tissue that he will never leave the chair.”

The Fight-for-Alfie committee will undertake a ‘hero100 walk’ from April 9-11, from the ‘Stairway to Heaven’ in Fermanagh to the showgrounds in Newry.

“This is our biggest challenge to date. It’s 33 miles and more a day so that Alfie and other wee boys just like him are one day able to complete a challenge just like this,” said Mr Pentony.

“My baby boy will die unless we find a way to stop this cruel disease.”

He added: “I am hoping to generate some awareness on Duchenne and give other families hope that receive this heartbreaking news.

“While the treatment is currently helping Alfie, we need to keep funding the study to give these boys a chance and I am begging for everyone’s help to do this.”

*If you would like to donate visit https://www.facebook.com/fightforalfie or visit www.fightforalfie.com