Family's fight for life-changing treatment advances
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Donnacha's parents Sara Hackett and Eoin O'Neill met with the Minister for Health Jennifer Carroll MacNeill, Cllr Teresa Costello and other parents of boys with DMD at Leinster House last week.Image 2 of 3
Little Donnacha O'Neill is a happy and outgoing three year old boy who has a love for the outdoors, horse riding and swimming.Image 3 of 3
Mum Sarah and dad Eoin have been tirelessly fighting for the drug to be rolled out in Ireland to help little Donnacha.A DRUG that could be life-changing for a little Trim boy living with Duchenne Muscular Dystrophy (DMD) is now being forwarded to the HSE for consideration to be rolled out in Ireland.
A week before his first birthday, Donnacha O’Neill (3), and his family’s lives changed forever when he was diagnosed DMD, a genetic disorder characterised by progressive muscle degeneration, which primarily affects boys.
Donnacha’s mother Sara Hackett described her and her fiance Eoin O'Neill feeling ‘utterly heartbroken’ when they found out about their son’s diagnosis.
That was before Sara and Eoin found out about a drug called Duvyzat or Givinostat, a nonsteroidal treatment used to protect and treat the muscle strength and function of those affected by Duchenne Muscular Dystrophy.
Children from ages six and up can take the treatment, and it is thought that the treatment works by helping to reduce inflammation, increase the body’s ability to repair muscles and by slowing down muscle loss. This means that young boys affected by DMD can live physically active lives for longer with the help of this treatment.
The couple advocated tirelessly for the drug to be rolled out in Ireland, as it has already began roll out in the UK and America. One year ago in June 2025, a briefing was held in the Dail and brought to the Minister of Health.
A demonstration was held outside Leinster House to advocate for the urgency of this treatment to be brought to Ireland faster.
Donnacha’s parents, Eoin and Sara, went to the Dail along with other parents whose children have been diagnosed with DMD to take part in this demonstration, using the impactful campaign slogan ‘Time is Muscle’.
Exactly one year on, Sarah and Eoin returned to the Dail. Sara said: “This time felt different. This time we were there with the news that the drugs group have recommended that Givinostat be approved for boys with MD in Ireland. They will now forward it on to the HSE Senior Leadership Team for consideration.”
While this news is more than relieving for the couple, their fight is not over yet. Sara said: “The Minister of Health met with us last week and ensured us that she would do her very best to help in getting this drug to families who need it as soon as possible.”
“Since our campaign started last year, three boys to my knowledge are now off their feet and risk the chance of not receiving the drug.”
Donnacha is a very happy little boy who is almost finished his first year in outdoor pre-school.
“Being outdoors helps to keep him strong and resilient. He loves horse riding and swimming. Givinostat will help to keep him stronger for longer and will help him continue to do what he loves the most.”