‘Every moment counts for children like Archie’ – Senator Costello urges action on life-changing Duchenne treatment

Fianna Fáil Senator Teresa Costello has called on the Minister for Health to urgently address access to a vital new treatment for Duchenne muscular dystrophy (DMD), a rare but devastating genetic condition primarily affecting young boys.

Speaking in the Seanad this week, Senator Costello highlighted the case of Archie Ennis, a young boy from Tallaght, whose diagnosis with DMD has sparked a community-driven campaign to raise €3.2 million for gene therapy treatment in the United States.

“Watching his parents and the community come together to try to raise €3.2 million for gene therapy in the United States has been truly heartbreaking,” she said.

Duchenne muscular dystrophy is a progressive neuromuscular disease that causes muscle weakening, with symptoms usually appearing between the ages of one and three. It is the most common lethal genetic disorder diagnosed in early childhood, affecting around one in every 3,500 baby boys globally. In Ireland, approximately 110 people are currently living with DMD, most of them under 18.

“These young children face tremendous challenges, including difficulties standing up, walking, running or even climbing stairs,” she said.

Costello drew attention to a promising new drug called Givinostat which has been approved by the UK’s Medicines and Healthcare products Regulatory Agency. The drug is now being provided through the NHS early access programme to eligible patients at no cost—but remains unavailable to children in Ireland.

“Givinostat is a relatively new drug that works to slow down the progression of muscular degeneration in individuals with DMD. While it cannot undo the damage done, it can significantly slow down the progression when administered,” she said.

Senator Costello described DMD as a disease that leaves families “racing against the clock,” and stressed that “as we reflect on the struggles of those living with DMD, we must acknowledge the urgency for accessing this life-changing treatment.”

Costello called on the Minister for Health to confirm the Government’s plans regarding the availability of Givinostat in Ireland.

“Every moment counts for a child like Archie, and it is crucial that we advocate for them so that they can also have the chance to benefit from these advancements in medical care,” she said.

“Without this option, 110 people will continue to suffer.”

ENDS