30-06-2025
Couple push for drug that slows down muscular dystrophy to be made available in Ireland
The mother of an eight-year-old boy who suffers from muscular dystrophy has met with TDs to push for a new potentially lifesaving drug to be made available in Ireland.
Dubliners Una Ennis and her husband Kenneth ran a high-profile campaign for their son Archie who was recently diagnosed with a muscle wasting disease that affects around 120 boys in Ireland.
The family has raised more than €1m to help secure specialist gene therapy treatment for Archie, which will cost €3.5million in the US.
In the meantime, Una Ennis is calling on the government to pay for a drug that is being rolled out in parts of Britain which will help slow down the disease that is attacking her son's body.
'I met with a number of TDs in Leinster House after we held a peaceful demonstration outside and we wanted to show a presence for these children," said Mrs Ennis.
'We are trying for Archie and for all the children to get this drug brought into Ireland to help them.
To get the diagnosis but have no medicine is heartbreaking, we need to have hope.
'The drug Givinostat has been brought into parts of Britain. We want that too, but we need the government to pay for it.
'We are still waiting on the pharmaceutical companies to put their application into the government to cover the costs or sign off on it.
"Either way there is no answer yet, but we have had a lot of support from lots of TDs including Sean Crowe and Senator Teresa Costello and progress is being made."
Givinostat is a drug used to treat muscular dystrophy in children while they can still walk. It works by slowing down the muscle deterioration by turning genes on and off within cells particularly in the muscle tissue.
The disease itself is a genetic disorder that weakens muscles and there is no cure. Una and Kenneth Ennis are now hoping to meet with the minister for health Jennifer Carroll MacNeill to discuss their son's situation.
'She has responded to us and is willing to meet with us, but we need the drug to be paid for as soon as possible. Time is muscle, that is the most important thing," said Una.
'Every day counts, we need this early access, there is an alternative in America but the treatment there is €3.5million.
'If we could just get that drug over the line, that would give all our children a start. But we need medicine now.
I can't watch my son get weaker. I think anyone with a child affected by this will know how we feel. They all deserve it.
'Time is muscle and all we can offer children here is a wheelchair, and physiotherapy which takes six months as well as some steroids.
'In the UK it is the next level, the standard of care there is unreal. We should have the same treatment here and not have to travel to the UK for it.'
