CAMPAIGN Anne Marie Walsh-Harte and her son Lewis (5) at their home in Castlebar.
For Castlebar woman Anne Marie Walsh, mother of Lewis Walsh (5), who suffers from Duchenne muscular dystrophy, the last month has been a hard-fought battle with the HSE.
“It’s been torture, proper torture. They’re leaving a human child’s life hanging in the balance,” she told The Mayo News yesterday (Monday).
On August 8 last, The Mayo News reported that the Walsh-Hartes were devastated by the HSE’s refusal to fund Translarna, a new medicine for children with 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 well into their 30s or 40s.
The HSE’s decision followed an appeal against an earlier decision in April 2016 not to fund the drug. Young Lewis’s family are not in a position to launch another appeal. “We haven’t got another two years to start this process all over again,” said Anne Marie. “Lewis will be seven by then, and his situation will have deteriorated at that stage.”
After the report appeared in The Mayo News, the Walsh-Harte family have had a glimmer of hope: Sinn Féin leader Gerry Adams and Sinn Féin senator Rose Conway Walsh have both come forward to offer their help them.
“We are very lucky to have them,” said Anne Marie. “At the moment we are waiting on a date to go to Leinster House, and hopefully there, we might meet one to one with Simon Harris.
“I’m looking forward to it, I feel that this could be our final hit at a reversal in the decision.
“We don’t want to get our hopes up but there is a small hope that this will work in our favour because we really are trying. If this doesn’t work out, we may well have to move to England, and it’s really not as simple as it sounds. It’s difficult to just drop everything and go after 31 years of living here,” she added.
News broke yesterday that a US-based company called PTC Therapeutics is suing the HSE for refusing to fund the treatment of the two children in Ireland who currently have DMD – Lewis, and another boy.
“We are delighted that the company is fighting to help us, but the time is the killer factor for us,” she said.
“It’s sad that it has had to go down this route, and with the lack of interest shown by the HSE, I don’t think they’ll be rushing this to court.
“We need progress to be made soon, come the end of this year we are going to have make our full decision, because time is running out … we haven’t got time to hang around.
“Even if this doesn’t work out for us, I know I have done everything in my power to fight this, I have tried every avenue. In a couple of years time, if I was to see him fading away, not having done anything to try to help him, it would kill me,” she concluded.