CF family left in limbo due to contractual complication with 'miracle' drug 

'The worst thing the HSE has done here is make us think that he was ever going to be able to access the drug at all, we started thinking about everything differently, with more hope'

Cork man Mark O’Keeffe and his wife Sarah and her seven-year-old son Charlie, who has CF. 

Thirty-five families across Ireland have been left in limbo after finding out their children won’t be able to access a life-changing cystic fibrosis (CF) drug for which the HSE sent them for extensive pre-drug testing, due to a contractual complication.

Cork man Mark O’Keeffe and his wife Sarah told her seven-year-old son Charlie, who needs a feeding tube due to his CF, that he had to undergo a battery of tests because he was going to get a new medicine that would make him healthier.