Time is muscle...Trim family advocate for life changing drug for their little boy

Donnacha O’Neill is a happy and outgoing two and a half year old little boy from Meath who loves to be outside and is due to start preschool in September of this year. He is dearly loved by his mother and father, Trim locals, Sara Hackett and Eoin O'Neill, and his older brother and sister.

Instead of being preoccupied with preparing for preschool and new adventures, Donnacha's parents have been spending their time advocating for a new treatment for Duchenne Muscular Dystrophy to be brought into Ireland.

Sara sensed that something wasn’t quite right when Donnacha was a few months old and began bringing her young son to different doctors and pediatricians.

A week before Donnacha’s first birthday, his and his family’s lives changed forever - he was diagnosed with Duchenne Muscular Dystrophy (DMD), a genetic disorder characterised by progressive muscle degeneration, which primarily affects boys.

Donnacha’s mother Sara described her and her fiance Eoin feeling ‘utterly heartbroken’ when they found out about their son’s diagnosis.

"We had dreams for our son, one of which was that he would someday play for the local GAA club, Trim GAA, like many of his family members have before. When we received the diagnosis, we thought our dreams for him had been crushed."

That was before Sara and Eoin found out about a life changing 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.

Duvyzat has already been rolled out in the UK and America, but it has yet to be distributed in Ireland, and while there are talks of the treatment being implemented, time is of the essence for these young boys, as the drug can only be taken while the child still has the ability to walk.

While there is still no cure for DMD, Duvyzat gives hope to those affected by Duchennes. The medication helps to reduce the inflammation and the buildup of scar tissues ultimately slowing down the progression of DMD.

Donnacha’s mother Sara said that "if Donnacha was able to access this medication, he’d be ambulant for longer. For any parents who have kids that are suffering with this, it is absolutely fantastic news."

While Donnacha has time on his side due to the drug not being distributed to anyone under the age of six years old, there are over 100 other young boys affected in Ireland today who crucially need as much help as they can get.

On Wednesday 11th June 2025, a briefing was held in the Dail and brought to the Minister of Health.

A demonstration was held outside of the building 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.

The slogan ‘time is muscle’ was used at the demonstration, truly capturing the urgency of the matter.

The CEO of Muscular Dystrophy Ireland, Alan Breathnach, and representatives of the organisation came down in support. The group were also joined by local Meath TDs including Aisling Dempsey, Johnny McGuirk and Darren O’Rourke.

The demonstration was followed by a briefing in the Audio-Visual Room of Leinster House to discuss the plan going forward with rolling out the treatment. The pharma company is expected to submit a review to NCPE and the HSE on the week commencing 28th July 2025.

While this is positive news to an extent, for many families, time is crucial as their children begin to lose the ability to move and walk. A representative of the Minister of Health was sent down to the Dail and stated that they are willing to back this motion to push for Duvyzat to be rolled out faster.

Two years is the estimated time until the roll out date, which is simply too late for some of those affected by DMD. Each day that passes is more muscle deterioration. The window for effective intervention is narrow for those affected.

"While Donnacha has time on his side being diagnosed so young, we are a community and we support eachother. Time is something we don’t have to waste’ said Donnacha’s mother, Sara. ‘The EU has conditionally approved this treatment and it is already available in other countries, just not in Ireland."

Conditional approval for Duvyzat means the medicine can be authorised with less complete data than usual because the benefits of making it available quickly outweigh the risks of not having all the information yet.

Donnacha’s mother Sara has also expressed her and other parents' frustration and how they are willing to do anything in order for their children to live happier, more active lives.

Using their voices to advocate for this is something that Sara or Eoin will not give up on, despite the complications.

"There are many aspects to getting the treatment distributed, but we are constantly hitting walls when we look for information. We have a parents group chat and we are pushing for an early access scheme and clinical trials."

"Once it’s brought in, we need clinicians that are confident enough to trial the treatment. There have been no flaws in the treatment yet and only great results from those who are using it in other countries."

Alan Breathnach, the CEO of Muscular Dystrophy Ireland said that "as Duvystat is only approved by the EMA for use in boys who are still able to walk, delays in access could mean that some children, eligible today may deteriorate and lose mobility before treatment becomes available, making them no longer eligible under the current criteria."

"Our community cannot afford to wait, boys in the UK and other parts of Europe are already receiving access to this treatment. This is about giving boys with Duchenne Muscular Dystrophy a better chance at life."

Now that Donnacha is two and a half and entering his toddler years, he wants to be outside all of the time. Sara and Eoin are hoping to prolong this passion for the outdoors with access to Duvyzat after he turns six.

"Eoin and I are very lucky to have so much support from our family, friends and community."

"Muscular Dystrophy Ireland has also been amazing. They have written letters and advocated for Duvystat to be brought in as fast as possible. We just want Donnacha to live the life of a normal little boy for as long as he can."