STATING THEIR CASE The Walsh-Harte family met the Minister for Disabilities Finian McGrath and Deputy Mary Lou MacDonald in a meeting facilitated by Sinn Féin Senator Rose Conway Walsh in Leinster House last week.
A Castlebar mother is pleading with the Government to change its mind and fund a drug that will change her son’s life.
The Walsh-Harte family met the Minister for Disabilities Finian McGrath and Deputy Mary Lou MacDonald in a meeting facilitated by Sinn Féin Senator Rose Conway Walsh in Leinster House last week.
Five-year-old Lewis Walsh-Harte is one of five boys in the country who suffer from an illness called Duchenne muscular dystrophy (DMD). DMD is a severe type of muscular dystrophy characterised by progressive muscle degeneration and weakness. The average life expectancy is mid to late 20s. However, it is thought that with excellent care, some sufferers may live into their 30s or even 40s.
The Walsh-Hartes were left devastated in August when the Government decided not to fund a life-changing drug called Translarna, which slows down DMD’s progress.
Since then Muscular Dystrophy Ireland (MDI) and the other affected families have been campaigning for the HSE to reconsider its decision on the drug, which is available in 20 other European countries.
“It is still a waiting game. Even after the meeting yesterday, as fantastic as it was, we still didn’t come away with an answer,” said Lewis’s mum, Ann Marie.
“It was a massive thing for us going to Leinster House, and I’m chuffed that we’ve been able to keep our fight going,” she added.
For Ann Marie and Lewis, time is a huge factor, and the campaigning mother feels that somebody needs to speak up before it’s too late.
“I’m so scared of running out of time. Lewis is six in November, so we have already lost a year of treatment he could have had. After going to Leinster House you have to feel that somebody there has got to step up and listen,” she told The Mayo News last week.
Ann Marie said that the family is looking at going to Germany for treatment. “They don’t debate when a drug is needed in their country, if it’s needed they have it,” she explained.
“We have looked into the UK, but your looking at having to live there for six months before we can get the treatment up and running, and we don’t have that amount of time.
Looking to the future, Ann Marie and her husband, Peter, are keen to keep the fight going for as long as they can.
“The only thing we can keep doing is getting out there and fighting. We hope now with a few TDs on our side, the fight will get stronger and they will continue to push for the funding in the Dáil,” Ann Marie concluded.