15-year-old Triona Priestley lost her battle with cystic fibrosis in May of last year, moments after singer Ed Sheeran sang Little Bird to her.
Now her mum, Bernie Priestley, has called on the HSE to reverse its decision not to fund a “life-changing” drug for sufferers.
Talking to RTÉ’s Liveline, Bernie explained how Triona’s wish was for CF to stand for Cure Found, and hopes the health service will reconsider funding Orkambi – a drug effective at tackling the root cause of the problem.
Talking on radio, she explained how 1,200 adults and children are “blighted” with the genetic mutation.
“Time might have run out for Triona but the fight goes on. [Orkambi] would absolutely make a world of difference to a number of people living with CF. It would be a life changer for her brother and the many others still suffering from this terrible disease. I’m hopeful the voice of the Irish people will be heard and this drug will be made available,” she said.
Talking about the drug, which would cost a reported €92 million annually, Cystic Fibrosis Ireland said it has the “potential to lengthen lives, increase the quality of life and delay the need for transplants”.
Taoiseach Enda Kenny ahs defended the HSE’s decision, saying: “[It was] made on objective scientific grounds”.
