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‘Archie is in the trenches but he needs a miracle now,’ says mum of Irish teen battling incurable muscular disease

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Archie Kerr Naughton

Archie Kerr Naughton

Archie Kerr Naughton

Paula Kerr Naughton’s heart is breaking.

Her three sons are all suffering from a condition called Duchenne Muscular Dystrophy (DMD), a progressive neuromuscular disease which destroys muscle tissue, and it seems that time is running out for Archie, her eldest boy, who is just 16 years old.

Together with her husband Padraic, she is praying for a miracle which will help prolong her son’s life as he remains in an extremely serious condition at the Mater Hospital in Dublin, where his heart is failing.

The couple are asking people to pray for their son in the hope that something will happen to change his life. A ceremony of hope was held in their home town of Roscommon on July 2 as the community gathered to show their support for the family, who have been living every parent’s worst nightmare since the three boys were diagnosed a decade ago.

“They were all diagnosed on November 9, 2012, with DMD, which is caused by a lack of protein called dystrophin and without it muscles become fibrosed and eventually die,” said 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 or cardiac failure.

“The average global life expectancy is mid-20s but, unfortunately, children as young as six have died from heart failure caused by the disease.”

According to Paula, it is the most common lethal genetic disorder diagnosed during early childhood. One in every 3,500 baby boys are born with DMD worldwide.

It almost exclusively affects boys, causing them to be wheelchair bound, and leaves them fighting for their lives by their late teens to early 20s.

Her two other sons, twins George and Isaac (12), are currently staying with family friends, as they are being sheltered from the reality of Archie’s condition – and Paula is asking for support from anyone who can do anything to try and help save her son’s life.

“Archie is in the trenches and we can only hope for a miracle,” she said.

She and her husband, who both work as nurses, are devoted to their three boys, who are all wheelchair users. They are calling on the relevant ministers in Health, Disabilities, Housing and Youth and the Taoiseach “to step up and do what it takes to make Duchenne sufferers’ lives matter”.

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Right now, the Naughtons do not feel that the lives of their children Archie, George and Isaac matter to the decision makers, who they feel could and should be supporting them.

In the 10 years since the boys’ diagnosis, their parents fundraised to build a suitable home to accommodate three growing children in wheelchairs.

They received no funding from the State, and instead, thanks to the generosity of friends and strangers, they not only raised enough to build the house but also “hundreds of thousands of euro towards research”.

Paula is desperate for “drug companies to change the way they do business and for regulators to pull their finger out” to improve treatment of DMD.

Sadly, Archie now needs a miracle to save his life – a terrifying and heart-breaking fact that the Naughtons must face. But they 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 families impacted by Duchenne.
 

Paula is urging people to share the hashtag #PrayForArchie. Visit
www.joinourboys.org


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