A short article I wrote for Cystic Fibrosis Ireland in support of their One in 1,000 campaign for this year’s mini marathon. You can support Eva’s Divas on http://www.mycharity.ie/event/berniefromevasdivas/ or on any of the Divas’ own pages. There are 25 of us and counting!
My name is Bernie Martin and I’m a 35-year-old Mum of two adorable kiddies. My son Danny is 5; he doesn’t have Cystic Fibrosis. And my daughter Eva is 2; she has CF.
Eva was diagnosed with CF at just three weeks old. Hearing those words coming out of the consultant’s mouth was like being stabbed in the stomach – it was shocking, devastating and just incomprehensible. There were no immediate CF links on either side of the family and our first child had a clean bill of health. We had no reason to fear that our second child would have any complications. We also knew nothing about CF at the time, and ignorance leads to fear. As our understanding of CF grows every day, so does our ability to cope, to fight, to accept.
CF is a chronic, life-limiting illness – that’s the bigger picture. But as a parent you can only tackle it one day at a time. You focus on the daily wins and hope they help you win the bigger fight. CF completely restructures your daily routine – there are inhalers, nebs and chest physiotherapy sessions twice a day. And that’s when Eva is well. You’re all the time trying to stay ahead of the illness. This treatment regime can be doubled or more when a chest infection takes hold. Eva also takes enzymes with her food as her body can’t absorb fat or protein by itself. That’s because her digestive enzymes get trapped in her pancreas thanks to the thick sticky mucus in her body. But, like anything, you get used to a routine and it becomes your ‘new normal’. Eva knows no different and that’s the massive benefit of newborn screening – she doesn’t fight her treatment regime, and this preventative care helps protect her health. That’s all the matters.
The hardest thing about CF is the uncertainty it creates around our daughter’s future. It’s a progressive illness and while treatment has come so far and new developments offer much hope, you still don’t know if your child will be one of the lucky or unlucky ones. Maybe we’ll manage to keep her illness in check and she’ll live a reasonably long, happy life. But despite medical advancements, many CF patients are still taken from this world way too young. You just don’t know what the future holds. You put a brave face on it and you live for the moment, but it’s in the back of your mind every millisecond of every day.
I’m taking part in One in 1,000 because I want to raise awareness of CF and, of course, funds for Cystic Fibrosis Ireland. And because I would do anything for my daughter. I’ve sky-dived for the cause, I’ve run for the cause, I’d do literally anything for the cause. I have to turn all the emotion that comes with CF into positive energy. And I want to lead by example. I want to show Eva that good can come from bad. That people are amazing. That she’s amazing. That’s she’s loved by so many people and inspires so many people. Our team ‘Eva’s Divas’ doing the Mini Marathon is just one small way of embodying that energy.
I’d encourage others to take part to help us make CF stand for Cure Found. So i you have a pair of runners but you don’t have a cause, we’d love to share ours with you. You get to lose pounds and raise pounds – everybody wins.
If I could sum up Cystic Fibrosis in one word I’d have to say it’s relentless. There’s just no escaping it. But the future’s bright and there’s so much hope on the horizon with new drugs and therapies being developed. So every day, we live in hope. But most of all, we live in love.
My one in a million is back in hospital.
Please support Cystic Fibrosis Ireland and help make CF stand for Cure Found.