A Ballinasloe mother says her two young daughters will now have a chance at a normal life following a HSE deal for a new Cystic Fibrosis drug.
Grainne Ui Luing, whose two young daughters have CF, had been left off a list of approved people for the drug along with 33 other children.
The HSE and Vertex struck a deal five years ago to provide Kaftrio to CF patients, with major improvements recorded in young people with Cystic Fibrosis.
Both sides had been arguing about the cost of including 35 patients in the 6 to 11 year old age group since last year, with the tablets unavailable to Grainne's daughters Fiadh and Caoimhe during negotiations.
Speaking to Shannonside News today, Grainne says once the treatment takes effect, her daughters can begin to fully enjoy their childhood again:
"Now that we can actually start our journey with this drug and start Kaftrio for the girls as soon as possible and that their life is going to change for the better. They cough themselves to sleep every night, they cough themselves awake in the morning, they spend all day clearing mucus from their lungs, it's just so draining for them. My kids would struggle to do a flight of stairs. We can't even imagine how much this is going to change their lives right now until we get our hands on it and until they get started on it but at least we're now being given the opportunity to get this drug".
