‘The sooner you get the treatment, the more mobility you can save'

A LAYTOWN family is racing against time to raise €2.7 million for life-changing treatment in the United States for their seven-year-old son, who is living with a rare muscle-wasting disease.

Rían Byrne Hanlon, a senior infants pupil at Scoil Oilibhéir Naofa in Bettystown, was diagnosed with Duchenne Muscular Dystrophy (DMD), a genetic condition that gradually weakens muscles and affects mobility.

His parents Mark and Tracy have launched a major fundraising campaign, 'Rían’s Army' in the hope of securing gene therapy treatment in the United States which they believe could significantly slow the progression of the condition. Doctors have explained that early access to treatment is crucial, as the therapy works best before significant muscle loss occurs.

“For Duchenne they say time is muscle,” Mark told the Meath Chronicle.

“Once muscle is gone, it can’t be brought back. The sooner you get the treatment, the more mobility you can save.”

The campaign has already raised close to €30,000 since launching in January, with community groups across East Meath beginning to organise fundraising events to help the family reach their goal.

Speaking about the moment they realised something was wrong, Mark said the first signs appeared when Rían was very young.

“He hadn’t been mixing with other children much because it was during Covid, but we started noticing he was falling more often,” he said.

“We also noticed he struggled getting up from the floor. There’s something called the Gower effect where a child has to use their hands to push themselves up because their muscles are weak.”

Concerned by the symptoms, the family contacted their local public health nurse before seeking further medical advice.

“We started doing a lot of googling and the same thing kept coming up — Duchenne Muscular Dystrophy,” Mark explained.

Blood tests later confirmed the diagnosis and the family were referred to specialists at Temple Street Children’s Hospital.

“That’s when we were told there is no cure,” he said.

Duchenne Muscular Dystrophy is a rare genetic condition that primarily affects boys and causes progressive muscle degeneration. Over time it can affect the ability to walk, climb stairs and carry out everyday movements.

Currently the main treatment available to many children involves steroid medication designed to slow the progression of the disease.

However the loving dad said even accessing that treatment proved difficult.

“The medication had to come from Spain and it ended up getting held up in customs,” he said.

“It was just roadblock after roadblock at a time when you’re already dealing with the shock of the diagnosis.”

While steroids can slow the progression, they cannot stop the condition.

“You’re supposed to see your kids getting stronger and faster as they grow up,” he said.

“With Duchenne it’s the opposite. You’re watching them slowly lose strength.”

The family say a gene therapy treatment currently available in the United States offers new hope.

The therapy delivers a modified version of the dystrophin gene responsible for muscle stability and is designed to help preserve muscle function.

“It’s not a cure,” Mark said.

“But from what we’ve seen it can be a game changer. You see children who couldn’t climb stairs suddenly managing it again.”

The treatment is not currently available in Ireland and approval processes in Europe could take years.

For families dealing with Duchenne, Mark said those delays are devastating.

“The sooner we can get this treatment the better his chances are,” he said.

Alongside the financial challenge, the Laytown man said families dealing with rare conditions often struggle to access adequate support.

“Because it’s rare there just isn’t the same level of support,” he said.

“There’s very little physio provided and a lot of the time you’re left trying to figure things out yourself.”

The family are also trying to adapt their home to support Rían as his mobility changes.

“We’re trying to create a downstairs living space because he struggles with the stairs,” Mark explained.

“But even getting reports and approvals for grants has taken months.”

Despite the challenges, Mark describes his son as a bright and cheerful child.

“He’s a fun little fella — always laughing. He has loads of friends down the road and he loves being out with them. He struggles to keep up sometimes but he never stops trying.”

Support for the Rían’s Army campaign is now beginning to gather momentum locally.

Among those stepping forward are the Duleek Drama Players, who will stage a special fundraising performance of their new production All The Way Back at Drogheda’s Droichead Arts Centre on Thursday 26th March.

The production, a domestic comedy by Bernard Farrell, runs from Tuesday 24th to Saturday 28th March.

Director Guy Lynch said the group wanted to help after hearing Rían’s story.

“We were touched by what this family is going through and wanted to get involved,” he said.

“Our audience can enjoy a great night’s entertainment while supporting a very worthwhile cause.”

For Mark and his family, the hope is that continued community support can help them reach their ambitious target — and give Rían the chance to access treatment while it can still make a difference.

“The sooner we can do it, the better,” he said.

To support the cause search "Rían's Army" on www.gofundme.com