Archie and his dad Kenneth, mam Una and sister Maisie in America last week
‘I’m so grateful we still have Archie here with us’
All Úna Ennis wants for Christmas is for the medication to treat her son Archie’s condition to be made available in Ireland.
“All we want for Christmas is Givinostat and gene therapy, every child deserves a right to medication,” she said.
Eight-year-old Archie Ennis was diagnosed just over a year ago with Duchenne Muscular Dystrophy, a degenerative condition that causes progressive muscle weakness.
It’s a condition that predominately affects young boys, with very little options for treatment in Ireland.
Archie was diagnosed on December 11, 2024, and Úna told The Echo that the last 12 months have been “so sad, so hard, so busy”.
“It’s just been crazy, but I’m so grateful that we still have Archie here with us,” she said.
Archie’s condition has deteriorated in the last year, as Úna said he struggles to keep up with his friends and is falling “an awful lot more”, a sign of progression of DMD.
“I think what keeps us going is to know that he’s okay for now, but as we do look into the future and we do see other boys to have DMD and have no medicine, life can quickly change dramatically.”
Archie, Úna and their family (Dad Kenneth and sister Maisie) have just returned from Atlanta, Georgia in the USA, where he underwent tests to determine his eligibility for treatment with gene therapy and with Givinostat, a new drug for DMD that can help slow the progression of the condition, though not eradicate it entirely.
Archie with his sister Maisie in their Christmas pyjamas
“We go back in January and he’ll have another test done and hopefully receive the gene therapy,” Úna explained.
“It will not cure him, but it will keep him on his feet for longer.”
The treatment is costly, not taking into account the costs of moving to Atlanta for for the duration of the treatment.
A GoFundMe page, set up by Úna on St Stephen’s Day last year to raise the necessary funds, has almost reached its €680,000 target.
“If we do go to America, we’ll be there for three months, so we just want to be at home for Christmas with all our family.”
“We hope to get the medication but we’re very scared of being in a different country, and the side effects and risks involved,” she added.
Úna’s wish for 2026 is for Givinostat to be approved for use and rolled out across Ireland as quickly as possible.
Fianna Fáil Senator Teresa Costello has been supporting the Ennis family in their campaign and 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,” Senator Costello said.
There are just over 100 young boys – and their families – in Ireland who are facing the same situation as Archie, who would benefit from the drug.
“Time is muscle,” Úna said.
“The longer that this goes on, these boys won’t be able to get that medication if they’re off their feet, so we need that medication as soon as possible.”
