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raising awareness Parents of brave brothers with terminal condition plead for help in finding a cure

It's estimated there are between 120 and 140 boys and young adults here with Duchenne muscular dystrophy - a condition which causes progressive muscle weakness.

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Brothers George, Isaac and Archie Naughton have Duchenne muscular dystrophy

Brothers George, Isaac and Archie Naughton have Duchenne muscular dystrophy

Archie and his parents, Paula and Padraic

Archie and his parents, Paula and Padraic

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Brothers George, Isaac and Archie Naughton have Duchenne muscular dystrophy

At Christmas time four years ago, Archie Naughton picked up and read a charity leaflet mistakenly left on the family table.

The then 11-year-old learned for the first time that he and his younger twin brothers were going to die by the time they were in their mid-20s from a little-known muscle wasting disease called Duchenne.

Archie's parents, Paula and Padraic, were about to bring Archie and his brothers George and Isaac (Teddy) to see Santa when he came across the leaflet.

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Archie and his parents, Paula and Padraic

Archie and his parents, Paula and Padraic

Archie and his parents, Paula and Padraic

Padraic had to stay at home to console a traumatised Archie, while Paula was left to bring the bewildered twins for their promised Santa visit.

Four years later, all three boys have to get around in wheelchairs, as the disease takes away the power of their legs.

Archie turned 15 last month and has bravely come to terms with what faces him. He and his devoted parents even went on ITV's Good Morning Britain show just before Christmas in a rare TV appearance to raise awareness of Duchenne.

Ten-year-old George and Isaac still believe in Santa, but the very idea of an all-caring Father Christmas still caused angst for the young twins.

Letters

"The boys, Isaac in particular, wouldn't write their letters," Paula tells the Sunday World.

"Of course it was tough for them because they have been home schooled since March and I was thinking 'oh it's just they're not really feeling the Christmas thing yet', because we had a lot of school work and tests and stuff.

"I told them about three weeks ago 'lads, the elves are socially distancing, everything is taking longer in Lapland, you need to put your letters in'. The eyes rolled. I said 'Isaac, you really need to write your letter darling'

"He started crying. I said 'what's the matter? He said 'mummy it's a waste of time writing to Santa'. I said 'why?' He said 'every year I ask him for a cure and he still hasn't brought me a cure'."

Beginning to cry, Paula adds: "These are the things that go on in their heads obviously. If I hadn't asked him to write his letter, I would never have known that."

Duchenne muscular dystrophy is a neuromuscular condition caused by a lack of protein called dystrophin and primarily affects boys.

Around 10 boys with the condition, which causes progressive muscle weakness, are born in Ireland each year. It's estimated there are between 120 and 140 boys and young adults here with the genetic condition that can be inherited.

The condition starts early in childhood and may be detected when noticing a child has difficulty standing up. Children with DMD will struggle to walk, climb and run.

The condition causes muscles throughout the body to weaken and waste, including those of the heart and chest, leading to certain death by their mid 20s.

Paula and Padraic are determined to continue helping to fight for a cure and they have raised €1.5 million to fund research projects.

They also need to build a house they can 'borrow', as they need a bigger place than their current two bedroom home. The house will be later given back to the trust they are part of.

Training

The couple work as mental health nurses in Roscommon. Padraig, who originally hails from Co Roscommon, first met Paula while training in London, where Paula is from.

"We had excellent training, but until our children were diagnosed I had never heard of it," explains Paula. "Part of the challenge - because it's so horrific and because it is so catastrophic- it has been awfully difficult for people to talk about it."

They found out that their sons had the condition when they went to a doctor in November 2012 as Archie was having problems sitting up in school. The doctor carried out tests and told them he suspected Duchenne and referred them to a specialist.

"When we saw the specialist in Dublin in January 2013, he put his head in his hands and he said 'go home and love your children'," recalls Paula.

"Which of course infuriated me, partly because I didn't need to be told go home and love my children. But what he meant was there wasn't really much he could do. He was a lovely man and was terribly upset that here he was with a family with three children that had the disease.

"So it's very hard for the clinicians, it's very hard for the families and historically we haven't really talked about it. That's part of the challenge, because unless people know they can't help you.

Campaign

"These children are heroic, their parents are pretty brave too and we basically need a campaign to try and get people behind it. We need to mobilise people."

The Naughtons usually turn down TV appearances but said 'yes' to Good Morning Britain, where Paula, Padraig and Archie were interviewed by hosts Piers Morgan and Susanna Reid. "Our purpose for going on Good Morning Britain, first of all it is an amazing opportunity," says Paula.

"Secondly I think it's really amazing that Piers Morgan has said he would publicly support the cause of Duchenne.

"Thirdly, what we are talking about is the need for raising funds for scientific research and trying to develop treatments and a cure.

Message

"We are using the example of people who will say 'Covid affects so many people', but the bottom line is, as awful as it is and it's a different disease process, Covid has the potential to kill about two per cent of the population.

"Duchenne kills everyone that has it. We need to accelerate research."

She also wants well known people to come on board and highlight the condition.

"People who would use their influence, in the business world or the world of celebrity to try and help us promote the cause," she smiles.

"We got [Chelsea striker] Timo Werner to do the video message for Archie. Harry Kane has sent them a message since. Isaac would be a massive Spurs supporter. It's the whole thing about raising awareness."

Celebrity chef Nigella Lawson also sent a live TV greeting to the family.

"Somebody did a screenshot of my husband's reaction," laughs Paula. "I think my husband was probably the most thrilled about seeing Nigella, to be honest, and all his mates were buzzing.

"The boys love cooking and they love Gordon Ramsay and Nigella and all these people. It was really sweet of them to do it, it was really, really kind."

She continues: "Piers Morgan said something really interesting. He said 'I can't imagine this. We've got three sons'. We need people to imagine this, 'what would you do if all of your children were diagnosed with a terminal disease, what would you do and what would you need?'

"By finding a solution for Duchenne, the methods of developing a gene therapy drug would also advance other illnesses as well, that's the reality," she stresses.

Paula is proud of the way her sons have coped.

"Archie, his name means courageous and bold, but bold as in brave, I call it the Irish brave," she reflects. "He really, really is. All three of them are.

"Archie is tough, he has to be tough. All of the children with Duchenne could teach the rest of us how to live. That's my assessment of children with Duchenne, or any disease. They are remarkable and very resilient."

Despite their ailment the boys have fought on as best they can.

"The disease prevents Archie doing the things he loves," she says. "I'd say he'd be a complete daredevil if he was physically able to be. He loves gaelic football. He was training to be a rugby coach.

"He was always the class goalkeeper. He would stand in the goal and be goalkeeper. Then he would get back in his wheelchair and go back into the classroom. The lads would go to Archie. He was like the leader. It was extraordinary to watch.

"I'm his mum and I'm biased, but he is an extraordinary young man, he really is."

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