“People with DMD don’t have time to waste – time is muscle”

Duchenne Muscular Dystrophy or DMD as it is commonly known as, is a progressive neuromuscular disease that causes the weakening of muscles over time.

It affects almost exclusively boys, with symptoms typically appearing between the ages of one and three. In Ireland today, around 110 people are known to be living with DMD.

Most of them are under the age of 18.

As the disease progresses, most children will need a wheelchair by the time they are 12. Some will develop scoliosis.

By their mid-teens, many experience heart complications and, by their late teens or early 20s, breathing problems often emerge, making the condition life-threatening.

Yesterday, Senator Teresa Costello (pictured above) co-ordinated a demonstration outside Leinster House to highlight the need for the fast-paced roll out of the drug Givinostat for boys with Duchenne Muscular Dystrophy.

Costello, who is health spokesperson for Fianna Fáil in the Seanad, has said she has come to know the difficulties young boys face with the disease through a young boy in Tallaght called Archie.

Archie’s mother, Una Ennis, has been advocating tirelessly for Givinostat’s approval.

“I have seen the difficulties faced by a young boy called Archie in my own constituency of Tallaght recently.

“It is heart breaking to see what his parents have to go through to get the care they need for their boy,” added Costello.

“But now, there is a real hope for these children in the form of Givinostat, which has receive European approval just this week.

“It has been seen as a breakthrough drug in the fight against the disease.

Seven-year-old Archie Ennis was diagnosed with Duchenne Muscular Dystrophy just before Christmas.

Doctors told his parents, Una and Kenneth, that Archie will likely be in a wheelchair by the age of 10 and that his life expectancy is early 30s.

Archie’s mother Una, who spoke yesterday, drew on the devastation her son’s diagnosis has left, “We are devastated at Archie’s diagnosis, and we are desperate to get him the medication and help he needs.

“How do I explain this to my little boy that Mammy couldn’t get him this medicine?”, she said.

“But now, we have a glimmer of hope with Givinostat. This can help Archie have a longer life expectancy, have a healthy heart and healthy lungs, and allow him to be on his feet for longer.

“Time is muscle for Archie, and it is absolutely heartbreaking to watch my son like this, but it can be helped, if we get Givinostat it can help.

“I just want to plea with Government to please help us, help our little boy, and every other little boy living with this cruel disease.”

Another parent who has two sons with DMD, one of who has received Givinostat, Eilish O’Sullivan, draws on her experiences of having her son on the drug, and the struggle of her younger son faces.

“I have a son who is 21 years old and he has availed of Givinostat. He has reaped the benefits of this drug.

“He can drive, he is heavily involved with our local GAA club, he has done two year in college in Architecture and hasn’t suffered with heart and lung difficulties.

On the other hand Eilish, who is from Donegal, needs to fight for her younger son, who cannot access Givinostat due to Brexit.

She said: “I have seen the devastation that other parents are facing who have children with DMD.

“My older son has reaped great rewards from Givinostat, but yet my younger son cannot avail of that.

“I have been holding my son’s ability to walk in my hands. Now, his ability to walk longer is in the Irish government’s hands.

Concluding Senator Costello has said listening to hundreds of families affected by DMD is heartbreaking and has called for a multi-disciplinary approach for effective management, which involves a team of specialists working together to address the wide range of symptoms caused by the condition.

“Listening to hundreds of family’s stories and their devastation of having a young child with DMD is gut wrenching.

“I believe we need a multi-disciplinary approach to this. A team should lead care from the time of diagnosis and typically includes, but is not limited to, neurologists, physiotherapists, occupational therapists, and specialists in respiratory and cardiac care. Ireland is not offering the range or standard of care needed to manage DMD – care which is available in other countries.

“Ultimately time is muscle, and we need Givinostat rolled out now,” she concluded.