Daughter’s words to father after cystic fibrosis announcement
A CASTLEDERG man has spoken of the emotional moment he was told that a new game-changing drug for people with cystic fibrosis is to be made available in the North.
Liam McHugh, who has been fundraising and campaigning for research into the inherited condition following the birth of his daughter, Rachel in 1992, admitted he wept at the news that Kaftrio is to be procured for sufferers.
Last week Health Minister, Robin Swann revealed that a deal had been secured with the manufacturer of the drug.
“Rachel came into me when the announcement was made and said, ‘Daddy I’m so proud of you.’ I started crying because this is the biggest and greatest thing to happen for those with cystic fibrosis here,” he told the TyroneHerald.
“When Rachel was born in 1992 the life expectancy for someone with cystic fibrosis was just a few years. The availability of this drug means that for the first time those with the condition can plan ahead because this drug targets the gene which caused CF and means that they can look forward to decades rather than years, of quality life.”
Since 1992, Liam has raised almost £300,000 for cystic fibrosis research and during that time he has taken part in 30 marathons. Now, in hindsight, he believes all that effort has been worthwhile.
“I always keep a record of my runs and have worked out that in the past 28 years I’ve covered 108,000 miles. It’s all thanks to my late brother, John, who really encouraged me in 1992 to get involved in doing something rather than feeling down in the dumps and helpless about the impact that cystic fibrosis would have.”
Liam is now an ambassador for the Cystic Fibrosis Trust. He has spoken at Stormont and Westminster to highlight the need for more research into the condition and to make ground-breaking drugs widely available.
“This announcement really is a dream come true,” he continued. “I just couldn’t sleep with the excitement after the Department for Health said that Kaftrio would be made available.
“We always hoped that this day would come sometime, and the news that it has finally arrived will take some time to sink in.
“There is a real sense of contentment, satisfaction and excitement. When I’m out running I always find it easy to pray and my prayers during all those 108,000 miles on the road are answered now.”
Health Minister, Robin Swann said he hoped that the drug would lead to a better quality of life for those with cystic fibrosis.