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The fight is on to save Alfie

November 5, 2018

The parents of a young Newry boy who is battling an incurable muscle wasting disease are appealing for help to raise the £150,000 needed to take their son to the US for potentially life-saving gene editing therapy. 

Six year old Alfie Pentony was diagnosed with Duchenne Muscular Dystrophy in 2016 after showing signs of the condition since he was 18 months old.  Despite countless trips to doctors and physios over the years with complaints of sore knees and walking on his toes, it was not until a routine blood test prompted doctors to carry out a genetics test, that parents Colleen and Jamie were given the life-changing news of their son’s incurable condition. 

Duchenne Muscular Dystrophy (DMD) affects around 1 in 3,600 boys and gradually breaks down every muscle in the body until the body can no longer function.  Life expectancy in Northern Ireland for boys with the condition is just 20. 

Almost two years since his diagnosis, the debilitating disease is already affecting young Alfie, who struggles to keep up with his friends and cannot take part in football and other kids activities. Walking up the stairs has become a major difficulty for the P2 pupil as his muscles get weaker and heartbroken mum Colleen says her son screams in the night with the excruciating pain in his legs. 

Since Alfie’s devastating diagnosis, the family have been tirelessly fundraising with Muscular Dystrophy UK to help fund research into the condition. Overwhelmed by the huge support they have received so far, the couple say they need the public’s help more than ever “in a race against time” to send the six year old to America where he will become one of the first group of children to take part in a two year clinical trial which aims to help DMD sufferers restore dystrophin in their body and halt the gradual wasting away of muscle.

“Alfie is terminally-ill, he is dying, Duchenne Muscular Dystrophy is slowly killing him, he has a chance to change that by taking part in a gene editing study in May next year, now we need the money to get him there,” says mum Colleen. “This is his chance and we really hope the community can get behind us.”

The couple have shared a number of heartbreaking videos and posts on the Fight for Alfie Facebook page, conveying the cruel prognosis for Alfie and all DMD sufferers and appealing for the public to help in any way they can to help the six year old undergo the gene therapy they hope can cure him. 

A number of fundraising events have already been organised including a White Collar Boxing event on November 30 at the Canal Court Hotel which will raise funds for Alfie as well as the Northern Ireland Children’s Hospice and another prominent local fundraising campaign, Ellen’s Journey. A Valentine’s Ball will also take place on February 15 next year at the Canal Court Hotel in aid of the Fight for Alfie.

To follow Alfie’s journey and upcoming fundraisers or to offer help or fundraising ideas visit the Fight-for-Alfie Facebook page.  Donations to the fund can be made via the dedicated gofundme page at www.gofundme.com/help-us-save-alfie

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