Archie Ennis will head to America to undergo tests
‘We’re incredibly hopeful’ as Archie moves to next stage
Tallaght youngster Archie Ennis is off to the United States of America to undergo tests to see whether he is eligible for a gene therapy trial.
Eight-year-old Archie has Duchenne Muscular Dystrophy – a progressive condition that causes muscles to get weaker over time.
He received the diagnosis in December, and has been unavailable to access medication for his condition.
Archie’s mother, Úna shared the news of Archie’s journey to America.
Úna said: “We’re incredibly hopeful as we move toward the next stage…this treatment won’t cure his condition but it has the potential to improve his quality of life.”
The possibility of passing these tests and entering into the clinical trial would provide Archie with the necessary medication that he is currently lacking.
Archie with his mother Una
Givinostat, a recent drug on the market that helps to combat DMD, is unavailable in the Republic of Ireland but is available in Northern Ireland, as well as Great Britain.
The drug is intended for those who are six and older – Archie has spent two years with this being unavailable to him.
It helps to restore muscle repair proteins, reduce inflammation and slow down the progression of DMD in the body.
In July, the fundraising for Archie’s care passed the €1 million milestone after seven months – Úna Ennis noted that she was “blown away” by the support.
Sinn Féin TD for Dublin South-West Seán Crowe discussed Archie’s dilemma in the Dáil and urged the government to adopt an all-island approach to healthcare.
Deputy Crowe said: “Children with DMD do not have the luxury of time while agreements are signed on individual cases or conditions.
“We must make better progress towards an all-island healthcare model so that experience, facilities, and treatment are made far more readily available for children like Archie.”
