‘Thank you everybody for supporting Archie and his story’

VIDEO

Tallaght child Archie Ennis and many other young boys across the country have been given hope after a new drug for Duchenne Muscular Dystrophy was recommended.

The HSE Drugs Group has recommended the approval of Givinostat, a drug that was previously approved by the European Medicines Agency last year, to the health service’s senior leadership team for approval, meaning that children like Archie are one step closer to life-changing medication.

Archie was diagnosed with DMD at the end of 2024 – DMD is a degenerative condition that causes progressive muscle weakness predominately in young boys, with very little options for treatment in Ireland.

Archie’s mother Úna described “the best day ever” after she was able to tell her nine-year-old son about the news, and thanked those who kept tabs for their support.

Úna said: “What a journey it’s been – and to get that news, just over the moon for all the families. For all the newly diagnosed families, what this is going to do for them and for their little boys.

“We did it, along with lots of other families in Ireland trying to get this over the line. Thank you all so much, everybody, supporting Archie and his story.

“Today is just the best day ever.”

Archie and his family had travelled to the USA at the beginning of the year to avail of treatment for the condition.

They had lived in the US for the first few months of the year, and the nine-year-old celebrated his birthday there.

Archie had even travelled back over recently to continue his treatment following some time at home with family and friends.

Archie’s story was recently highlighted on an episode of RTÉ’s ‘Prime Time Investigates’ and the need for Givinostat in Ireland was underlined.