“Duchenne Muscular Dystrophy - no treatment, no cure, no words”

“Duchenne Muscular Dystrophy - no treatment, no cure, no words”
Businesses and schools across the midlands and west are being encouraged to brighten up their offices, shops, buildings and classrooms by wearing orange on May 1.

Businesses and schools across the midlands and west are being encouraged to brighten up their offices, shops, buildings and classrooms by wearing orange on May 1.

Wear Orange Day 2015 is the second such event hosted by the Join Our Boys Trust, which was established to provide funds for three Roscommon brothers who have Duchenne Muscular Dystrophy (DMD) and to support children in Ireland with the condition.

Archie and twins George and Isaac are the only children of Paula and Padraic Naughton from Roscommon town. Speaking to the Leader last week, Paula told of how the family’s life changed on November 9, 2012, when all three of her boys were diagnosed with the neuromuscular disease.

Initially, there seemed to be nothing to worry about. Archie had a serious case of meningitis as a toddler, and didn’t walk for a while afterwards. When he had trouble with one of his legs, it was believed that it was as a result of the meningitis.

However, when Isaac had trouble picking himself up at approximately 18 months old, Paula and Padraic brought their boys to a doctor. Tests were carried out and the diagnosis was given the next day.

“I don’t think there is a way to describe that feeling,” Paula admitted. “It’s been two years and five months and I still don’t have the vocabulary to describe it.

“I’ve always said Duchenne Muscular Dystrophy - no treatment, no cure, no words.”

DMD is an extremely serious life-shortening condition that causes muscle weakness.

For a time after the diagnosis, the couple kept it to themselves, continuing on with their lives.

“We pretended to everyone else that everything was okay,” Paula continued, explaining that meanwhile, she tried to contact every scientist and clinician she could find to get some answers.

“Quite early on we made the decision to do something about it,” Paula said.

The couple were advised to set up a fund and on March 9, 2014, the Join Our Boys Trust was born, consisting of four groups of volunteers; the Clinical Research Group, a Fundraising Group, a group to build a house to best support the boys’ needs and a PR and Media Group. To date approximately €700,000 has been raised.

Grateful for all the support received from the Roscommon Chamber of Commerce, Roscommon Rose Centre and 2014 Roscommon Rose Jacqueline Dowd, local businesses, media, families and schools, and her own family in the UK, Paula added that everything had been done with “a heart and a half,” revealing that she was ‘humbled’ by the work of the volunteers.

Now, the latest fundraiser will see the region shine as locals are invited to don the boys’ favourite colour, orange, on May 1, George and Isaac’s fifth birthday.

“Orange is the colour of hope and it’s a bright and sunny colour,” Paula pointed out. At 6.30pm, volunteers and supporters will march in solidarity for all children with DMD.

Information packs for primary schools are all gone, but secondary schools can still avail of them by contacting joinourboys@gmail.com or calling 085 1212333 or 090 66 30000.

Fundraisers will continue throughout the year. In June, a number of ladies will take part in the Flora Women’s Mini Marathon in aid of the Trust and if any ladies have not yet chosen a charity, they are being urged to consider the worthy organisation.

On June 24, the Trust will host a conference on DMD in Croke Park, with speakers from all over the world taking part. All are invited to attend and any businesses interested in being a sponsor are encouraged to get in touch.

As well as fighting against the disease on a national level, Paula and her family continue to battle on personally too. Archie is ‘a real warrior’, Paula said, but now has significant problems such as walking up the stairs and running, while the twins have trouble with stairs, though they “haven’t a clue what’s going on”.

With DMD sufferers in Ireland having a lower life-expectancy than in other countries, the couple have often been asked why they don’t go to the UK.

“That’s not going to help the children that are left here,” Paula stated, saying that the Trust hopes to “ensure that the children have the best possible chance”.

“We believe all children should be entitled to that, regardless of where they live.”