Health

Friday 1 August 2014

Shattered parents fight for their boys after devastating diagnosis

Archie (8) and three-year-old twin boys George and Isaac have all been diagnosed with Duchennes Muscular Dystrophy
Archie (8) and three-year-old twin boys George and Isaac have all been diagnosed with Duchennes Muscular Dystrophy
Archie (8) (centre) with twin brothers George & Isaac Naughton (3) - all the boys have been diagnosed Duchennes Muscular Dystrophy (DMD). Caroline Crawford story.
Archie (8) (centre) with twin brothers George & Isaac Naughton (3) - all the boys have been diagnosed Duchennes Muscular Dystrophy (DMD)
Archie (8) Naughton and his brothers have been diagnosed Duchennes Muscular Dystrophy (DMD). Caroline Crawford story.
Archie (8) Naughton and his brothers have been diagnosed Duchennes Muscular Dystrophy (DMD)

A couple whose three young boys were diagnosed with terminal illnesses on the same day have told how their lives were shattered by the diagnosis.

In September 2012, Padraic and Paula Naughton were given the devastating news that their eight-year-old son Archie and three-year-old twin boys George and Isaac had all been diagnosed with Duchenne's Muscular Dystrophy (DMD).

The neuromuscular disease is fatal in all cases, and there is no treatment or cure.

"There was no family history, there were no alarm bells at all," said Paula from her home in Roscommon town.

She recalled how they first became concerned in September 2012, when their then two-year-old son Isaac was having problems getting up from the floor.

Their oldest son Archie also had an issue dragging his leg, which the family believed was as a result of a bout of meningitis he had survived when he was just two.

"He had a problem with mobility and all of us and the medical team put it down to the meningitis," said Paula.

However, when Isaac started to experience similar difficulties the family brought him to a pediatrician who decided to carry out tests on all three boys.

"The tests were done on the Thursday and on the Friday we were told they had Duchenne's Muscular Dystrophy. At that stage, I was 99pc sure what they were going to say.

"To be honest there aren't any words to describe how we felt or how we were going to deal with this. Sixteen months on, we're still unable to find the words," she added.

SHOCK

"We were in a complete state of shock when we were given the diagnosis and we're still trying to deal with it. Why us, why this terrible news?" added Padraic.

Determined to fight for their boys, the couple set up a trust, 'Join Our Boys', which aims to raise awareness of the disease, work in collaboration with charities funding research into the condition and ensure their three young sons have all the resources they need.

"We want to find hope in a situation that could be completely hopeless. For every child with Duchenne's, the way the disease manifests is individual. The hope is to try and keep as mobile as possible for as long as possible," added Paula.

Each year around 20,000 children worldwide are born with DMD; 99pc of these are boys. It is typically diagnosed in children between the ages of three and seven, causing them to be wheelchair bound from the age of eight to 12. The illness destroys muscle tissue and leaves those with the condition fighting for their lives by their late teens to early 20s.

"It starts with the ability to walk, and then it will affect the muscles in their arms," said Paula.

"It also causes curvature of the spine and the boys will need operations to fix this to help them breathe."

The couple must now find ways to tell their sons about the illness.

"We told Archie about 'Join Our Boys' and he knows his muscles don't work properly and are a bit silly and that there are doctors around the world trying to help him. But how could you tell a child what will happen?" she added.

Paula and Padraic paid tribute to their neighbours and local community in Roscommon who have rallied around.

"The local community have been amazing and a huge support to us. It gives us the strength to keep going," said Padraic.

FOR MORE INFORMATION, AND TO HELP THE TRUST GO TO WWW.JOINOURBOYS.ORG

Irish Independent

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