Young Archie Ennis from Tallaght gives a thumbs up after receiving his treatment in America
‘Today our little boy Archie received his treatment’
The family of Tallaght boy Archie Ennis are “beyond proud” of him as he has finished part of his treatment in America.
Eight-year-old Archie, diagnosed just over a year ago with Duchenne Muscular Dystrophy, had his last round of gene therapy treatment for his condition on Friday, January 30.
He and his family moved to Atlanta, Georgia earlier this year for three months for the gene therapy treatment.
“Today our little boy received his treatment,” Archie’s mother Una shared on Friday afternoon.
“He did it — and we are beyond proud of you, Archie. Your strength and resilience are truly admirable.”
However she told The Echo he still has “a long road to go”.
“After gene therapy he will be monitored very closely for signs that the medication is working and not affecting his liver or heart,” Una explained.
Archie’s parents Una and Kenneth are ‘beyond proud’
“He will have other medication after his gene therapy to keep him strong, he is being looked after very well here in America.”
Archie will attend appointments every second day for the next number of weeks to ensure he continues to respond well to the gene therapy.
Duchenne Muscular Dystrophy, a degenerative condition that causes progressive muscle weakness predominately in young boys, has very little options for treatment in Ireland.
The current treatment for DMD is a drug known as Givinostat, which is not yet available in Ireland.
While it has been approved for the EU market, the HSE is conducting a full health technology assessment (HTA) following an August 2025 application.
“The process is taking some time, we know the HSE and the NCPE (National Centre for Pharmacoeconomics, Ireland) are working on it but we hope that they make it available soon,” Una added.
She also thanked everyone who has supported her and her family throughout Archie’s treatment.
“We are deeply grateful for the incredible support shown to our family, for every event, every donation, and every message, we truly could not have done this without you.”
