Family’s fight for son’s disease moves ‘crucial step forward’

A family fighting with their 7-year-old’s rare disease celebrated a “crucial step forward,” as the Minister for Health agreed to meet them to discuss the introduction of a new medicine into Ireland.

The story of Archie Ennis has gotten the people of Tallaght involved since last December, when the boy was diagnosed with degenerative condition, Duchenne Muscular Dystrophy (DMD), to fundraise for life-changing treatment in the United States.

One month ago, a new hope was given to the family as the European Medicines Agency granted marketing authorisation to inhibitor substance Givinostat, which is already used overseas to delay progression of the disease.

Archie’s parents Una and Kenneth Ennis have called for the medicine to be introduced into Ireland as soon as possible to improve the daily life of their boy and all the others in his situation.

“The data have shown what it can do. It can give children with DMD a longer life expectancy and keep them on their feet for longer,” said Una as she protested outside of Leinster House in June.

“While there’s treatment available for children with other conditions, children with Duchenne are just handed a wheelchair and then left on their own. Every day that Archie doesn’t have any medicine, his muscles are dying.”

While still concerned with the lengths of Irish bureaucracy, the Ennis’s managed to secure a meeting with Minister for Health, Jennifer Carroll MacNeill, “to discuss bringing Givinostat into Ireland,” as Una announced on her social media on Tuesday, July 8.

“This is a crucial step forward in making vital treatments more accessible, for Archie and all boys in Ireland living with Duchenne,” she wrote.

Una also thanked Senator Teresa Costello who supported her at the protest and helped her get the meeting with Minister Carroll MacNeill.

A few days earlier, Una also announced that her fundraiser started in December, which had a target of €3 million, has now reached €1 million thanks to countless community fundraisers, runs, concerts and all kinds of events organised by local groups to support Archie.

“Thank you all so much, for every event planned and every single donation, we are blown away,” she wrote.

“All of your support gives us so much hope for Archie.”

DMD is a rare degenerative condition that causes rapid, progressive muscle degeneration and weakness, starting from the legs, hips and shoulders, until it reaches the lungs causing respiratory difficulties and finally the heart.

Givinostat, the active substance of a medicine called Duvyzat, can inhibit one of the enzymes responsible for the condition and this may help reduce inflammation and tissue scarring and thickening.