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To find out at three-weeks old that your perfect newborn child has cystic fibrosis is devastating.
It is a life-threatening, ruthless disease that has the people who live with it on a daily basis fighting to stay healthy with a battery of pills for nearly every organ to keep them working, and a nebuliser to help the lungs. And then there’s the physio and other medicines.
What is a common cold to the most of us can send a person with CF into hospital on IVs for a number of weeks. Unfortunately, a hospital these days is the most dangerous place for a person with CF, as the facilities in Ireland are completely substandard.
Ireland has the highest rate of CF in the world, with the shortest life span because of the poor facilities.
I can’t cure my son of CF but the next best thing is to create the conditions that will help him live longer and healthier, including tirelessly fundraising to build a unit fit for purpose to help all adults and children with CF.
In 2011 I had the pleasure of meeting a wonderful man called Joe Browne, who was the founder of build4life, and was raising millions for facilities for people with CF at CUH.
After many years and many hoops we have the money — first came the state of the art respiratory clinic for all respiratory patients, in COPD, asthma, lung cancer, etc, which was solely funded by build4life. But now at the final hour, when the money is about to be handed over, the CUH decides (not alone to make build4life pay for 22 beds, nurses’ station, equipment, gym) that they will not sign a contract to ringfence what was 10+2 beds, (now reduced to eight beds), that we were promised. What kind of society are we living in? This is ludicrous, and in the meantime, while CUH refuse to accept the €1.8m, people with CF are getting sicker as they are either being placed in closed-off beds with no staff, or left at home until a general ved becomes available.
Carraig na bhFear
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