A CORK mother warned that HSE delays to sanction a new drug are putting her seriously ill little boy's life on hold.
Rebecca Bulman's five-year-old son Harry suffers from spinal muscular atrophy and up to now has been denied access to the drug Spinraza which she said could lengthen his life significantly.
The Health Service Executive is currently examining the possibility of sanctioning the market's only treatment for the rare muscle-wasting disease following a price drop by manufacturers. A decision is set to be made in relation to the matter in the next 27 days.
The HSE leadership team initially decided against introducing Spinraza to Irish patients due to cost factors. Rebecca - who was told her son would only live into his late teens or early twenties - was among families protesting the decision outside Leinster House last February.
Spinraza is approved in 25 countries around Europe with the exception of Estonia and the UK, though it is available in Scotland.
The mother-of-one from Youghal said that Harry's condition is worsening with time, making the situation even more frustrating.
"The longer this goes on, the worse things will get for Harry," she said. "The last few months of waiting have been agonising," she said.
"This is my child's life so for the last few months I've thought of nothing else. The sooner Harry gets this the more effective it will be so time is critical in a situation like this. It's not just the kids who are suffering, the adults deserve this just as much."
The Youghal woman considers it important to be a voice to others.
"There were a lot of people with the illness who couldn't make the protest on account of the cold weather. Even a chest infection could put you in hospital for a month."
Ms Bulman emphasised that she will never give up on her son.
"We really don't have any idea what is happening. It's hard to think that they could deny this drug but there's no way of knowing what could happen. We have to stay hopeful about everything. You can't give up on your child."
"Harry's already told us he's going to be a wrestler so he can make lots of money to look after us," she laughed. "I would like to see him get married and have kids. Everyone deserves to be happy."
She is determined not to interfere with Harry's progress.
"He can sit by himself with his brother at the moment and they can play together on the floor. However, it's difficult to think that all these little things could be taken away from him without any notice. If the drug was made available he could live a longer, more fulfiling life and wouldn't be as sick."
"It would mean everything for our family. He often questions me about why he can't walk or do things like the other children. He said he wished he could go to the bathroom by himself-something so many of us take for granted."
Rebecca described the situation as frustrating.
"It makes you angry every time he has a fall or gets sick because you know there's something out there that can help him. Even being able to do little things like turn in bed would really help him. I don't think there's anyone in this world who would say no to these children if they met them, or even the adults. It wouldn't be the same if they were dealing with this in their own family. There were even politicians crying on the day of the protest."
Harry is one of around 70 people across the country living with SMA. Some 25 of that figure are children.