‘I don’t want them to suffer like this’: Archie died at 16. There’s still no treatment for his twin brothers

Losing a child, the worst heartbreak imaginable for parents, is something most of us are fortunate enough never to experience. But Padraig and Paula Naughton are living through this nightmare after the death of their beautiful son Archie last July.

The 16-year-old had Duchenne muscular dystrophy, or DMD, a “catastrophic muscle-wasting disease” usually characterised by a life expectancy of about 20 years. By the cruellest twist of fate, his younger twin brothers, George and Isaac, have the same diagnosis.

“They were all diagnosed on November 9th, 2012, with DMD, which is caused by a lack of protein called dystrophin. Without it, muscles become fibrosed and eventually die,” says Paula. “It affects all muscle tissue, including those related to breathing and keeping the heart beating.

“People with DMD become paralysed, usually between the ages of eight and 12 and lose the ability to use their arms and upper body, eventually dying of respiratory and/or cardiac failure. The average global life expectancy is the mid-20s, but, unfortunately, children as young as six have died from heart failure caused by the disease.”

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Paula says she and Padraic, who are nurses, were “so privileged to have been gifted three beautiful sons”; until their diagnosis they had no idea what lay ahead of them. “Archie was born in December 2005. He was the greatest Christmas gift any family could wish for,” she says.

“His beautiful identical twin brothers arrived in the spring of 2010. We felt as though all our dreams had come true. Not only was our family complete, but we were also happy living in a lovely community in Roscommon town and both enjoying our work as mental-health nurses.

“We had been living the dream until they were diagnosed with Duchenne. It is caused due to a lack of a protein which stabilises and protects muscle and it mainly affects boys. Over time, the child becomes paralysed, and as they go through the teenage years they become progressively weaker, requiring help and assistance with all activities of daily living. Even in 2022, there is still no treatment or cure for Duchenne.”

Archie loved life, and believed that anything and everything was possible. He was still able to drive a tractor until his death

Paula says that before his death, Archie was “extraordinary for a 16-year-old with Duchenne”.

“He was still able to propel himself in a manual wheelchair, as opposed to an electric one,” she says. “He loved life and believed that anything and everything was possible. He was still able to drive a tractor until his death, and spent a lot of free time with his beautiful friends Anne and Mark on the farm in Oran. He had some cattle and big ambitions to set up his own business in the near future. He was also training to be a coach with Creggs and Connacht Rugby – and one of his many ambitious was to be a part of the Irish squad eventually.

“He also loved music, and this helped him enormously as he played the drums and loved to sing – in fact, he sang morning, noon and night. As well as being a hobby, the singing helped his confidence: he had a stammer, but this disappeared when he sang. So the silence in the house since his death causes us so much pain and sorrow. We miss everything about him: his smile, his sense of humour, his steady personality and all the potential that died with him. It is just so, so cruel.”

[ Parents of boy with genetic muscle disease announce death of ‘adored’ son ]

Coping with the death of one child is horrific, but knowing that a similar fate awaits your other children is beyond comprehension. Paula says her eldest son’s dying wish was that his brothers wouldn’t have to endure the suffering he did, and she is desperate to honour this and continue to fight for her children’s future.

“Archie became unwell in June and died of heart failure on July 7th in the Mater hospital,” she says. “It is impossible to express the sheer agony and pain of losing a child. We are all lost and utterly broken without him, and have accepted that we shall never, ever recover as a family.

“But as he lay dying in hospital, he begged me: ‘Mummy, you must find something to help George and Isaac – please, I don’t want them to suffer like this.’ So we are desperate to honour Archie’s wishes and his incredible legacy.”

She and her husband are calling on the relevant ministers in the Departments of Health, Disabilities, Housing and Youth, and Taoiseach Micheál Martin, “to step up and do what it takes to make Duchenne sufferers’ lives matter”.

Over the 10 years since the boys’ diagnosis, the family have received no funding from the State. Instead, thanks to the “generosity of friends and strangers”, they raised enough money to build a suitable house to accommodate three teenagers in wheelchairs, as well as “hundreds of thousands of euro towards research”.

The human cost to all families affected by DMD is immense and immeasurable – and Paula is desperate for “drug companies to change the way they do business, and for regulators to pull their finger out” in order to effect change in treating this terrifying disease.

“To support the boys, we established a trust, joinourboys.org, in 2014,” she says. “This endeavour was a community initiative, set up with the support of our friends and neighbours.

“The response locally and beyond has been nothing short of phenomenal. We have managed to contribute significant funds to international translational research projects, hold two international conferences in Croke Park, and build a house, which we are borrowing, in order to accommodate the boys’ needs until their deaths.

“Without a treatment to try and slow down this vile disease, George, Isaac and every other child born with Duchenne are going to die very, very prematurely. Burying a child is the worst thing we have ever experienced; there are absolutely no words to convey the sheer horror. The days and weeks since Archie died feel so much longer, hard and darker. The void he has left is enormous and catastrophic.

Our dream is that, one day, families will be told: ‘I am sorry to tell you that your child has Duchenne muscular dystrophy, but this is how we treat it and this is how we cure it’

“Archie was our guiding light, and he occupied the most space in our family. It is beyond horrendous to try and exist without him. The situation is obviously made even worse because, without a treatment, George and Isaac have the same fate – and it is hard for us to really understand how it must feel for the boys knowing this. Of course, they are as tenacious and amazing as Archie. But losing their big brother is a massive loss for them in so many ways.”

Sadly, it is too late to help Archie, but the Naughtons say they “cannot and will not accept” that there is nothing which can be done to save or extend the lives of George, Isaac and the many other people impacted by Duchenne.

[ ‘Our children were going to die and there was nothing we could do about it’ ]

One man who went above and beyond to raise funds for research of the disease is Ben Banaghan from Tipperary, who ran the length of Britain during September to raise awareness and funds for the trust. “It was an heroic endeavour which risks his own mental and physical wellbeing, but he was determined to succeed,” Paula says. “He was supported on the epic journey by a team of volunteers, and witnessing their care and compassion for both Ben and our boys has been humbling.

“The money raised is going to be doubled by Ben’s employer ISG Ltd, and will support the trust in meeting its aims – and we are so grateful. Archie would be so proud, as he competed in three Dublin City Marathons as an assisted runner and had hoped to join Ben on part of the run which coverwed John O’Groats to Land’s End.

“Our dream is that, one day, families will be told: ‘I am sorry to tell you that your child has Duchenne muscular dystrophy – but this is how we treat it and this is how we cure it.’ And we hope we can make that dream come true.”