Twin boys from Roscommon who are battling a life-limiting illness are hoping to take part in a groundbreaking clinical trial in America.
George and Isaac Naughton, aged 14, live with the catastrophic muscle-wasting disease Duchenne Muscular Dystrophy (DMD). Their brother Archie, a keen rugby player, runner and farmer, died of DMD aged 16, and his family say that his dying wish was to find a cure.
Parents Paula and Pádraic Naughton said the boys now have the chance to join a groundbreaking trial in the US, which may slow down the cardiac damage caused by the disease. However, it comes at a cost, and the family need to raise €650,000 by January 6 to finance the boys’ first 20 treatments.
Paula and Pádraic have issued a new appeal for support of their Join Our Boys trust – which they set up in 2014 – to help make the trial possible.
‘This is a critical step forward in the fight against this devastating disease, and our family are honoured that George and Isaac have been chosen to participate,’ Paula said. ‘While this opportunity brings hope, it also comes with a significant financial cost. To ensure George and Isaac can receive the first 20 treatments each, the Join Our Boys Trust is hoping to raise €650,000 by January 6, 2025.
‘We appreciate that this is an enormous figure for Join Our Boys Trust to achieve. We have no other choice but to try,’ she added.
In 2012, the family learned the devastating news that all three boys were diagnosed with DMD – when Archie was just six and the twins were two and a half.
The disease has already impacted on the boys’ ability to walk, use their limbs, or even hug the people they love. Those who live until their late teens are likely to become totally paralysed and will eventually die of respiratory or heart failure.
George, a talented artist, and Isaac, a sports fan and academic star, are paralysed and in wheelchairs. Both of them are now struggling to use their arms.
The US trial offers hope, not only for George and Isaac, but for many other children affected by the disease. It aims to prove that a specific treatment can slow down cardiac damage which causes cardiomyopathy; a life-threatening complication of DMD.
As well as helping to fund the trial, the Join our Boys Trust is striving to identify a permanent cure for DMD. Since the trust was established, enough money has been raised to build a specially designed house in Roscommon Town, to cater for the family’s needs.
The house belongs to the trust, not the Naughton family, and everyone who works with the trust is a volunteer. The Naughtons are asking people to support the fundraiser either by buying tickets for the Join Our Boys Trust bumper Christmas raffle or by donating via the ‘Save our Hearts’ fundraising page.
