'He's only five and doesn't know what's happening': Liscarroll rallies around little boy with rare muscle disorder

THE family of a terminally ill little boy praised the community of Liscarroll after they pulled together to raise funds for his medical expenses.

Five-year-old Oliver Barlow’s mum Siobhán, who is a local of the area, said she was touched by the efforts of her brother Daniel, who is Oliver’s godfather, to organise a fundraiser in his honour. The Oliver Barlow Charity Car Run brought together classic car enthusiasts, friends, and family who all donated in a bid to help the family deal with a devastating diagnosis of Duchennes muscular dystrophy (DMD).

The genetic disorder is characterised by progressive muscle degeneration and weakness caused by the alterations of the protein dystrophin keeping muscle cells intact.

A carpenter by trade, Simon had been working tirelessly to construct a self-build home in Galway for the family. This was to facilitate the DIY adaptions required for that inevitable stage when the physical effects of Oliver’s disease take their heartbreaking toll. Simon said that financial constraints are preventing both parents from spending as much time making memories with Oliver as they would like.

“I could quit my job and spend all my time with my child while I still can but there are still so many bills to be paid,” said Simon.

“Even when I was building the house for him, I felt this sense of guilt because it was time that I should have been spending with Oliver.”

Building the house proved both physically and emotionally taxing for Simon.

“Every adaption that I made nearly killed me because it was another little reminder of what the future holds. A lot had to be done to ensure that when the illness really takes its toll, the changes will be as minimal as possible. There were so many things to think about, such as hoists and ensuring there are as many sockets as possible for the medical equipment he will eventually need. For two years I spent every morning, evening, and night I wasn’t working trying to get it to the level it’s at now.”

He opened up about the daily challenges, adding: “For every child with Duchennes the outcome is the same. Specialists have told us that there won’t be a cure in Oliver’s lifetime. I feel sad that he can’t keep up with his friends when they are playing cops and robbers. We find that he tends to prefer the company of girls now because they tend to be more sympathetic when he can’t keep up. His sister Emily is great with him and even helps with his medication in the morning. She is still only seven and she only knows that Oliver has sore legs. She is a very emotional little girl and will bring him things and take care of him when his legs are tired. We worry about how she will cope when he starts to deteriorate in the future. The internet is a big concern for us because in a few years’ time she is going to know how to google these things and learn all about the harsh realities.”

The illness was identified by a public health nurse who observed Oliver having trouble keeping his head up during tummy-time sessions.

“After the diagnosis, we were told to go home and enjoy our home,” said Simon. “It’s something that no parent ever wants to hear. The disease is rare enough for many doctors out there to know little or nothing about it.”

Simon and Siobhán are preparing themselves for the day when Oliver starts to ask questions.

“He’s only five and doesn’t know what’s happening,” said Simon.

“Oliver doesn’t ask questions, but those questions will come soon. It’s difficult to hear Oliver tell us he wants to be an airplane pilot when he grows up. 

"There are certain moments that catch you where you’re reminded of the reality. Sometimes a simple moment like seeing Oliver making raspberries at the window leaves me with a lump in my throat.”

Oliver’s mother Siobhán shared his sentiment, adding: “A parent wants so many things for their child growing up. They want to see them get married and be happy. It’s like you’re grieving for a child you still have, and that’s probably the hardest thing about Duchennes.”

Those who would like to contribute to Oliver’s medical costs and equipment, as well as his future needs, can visit https://www.gofundme.com/f/Oliver-Barlow-charity-car-run.