PWCF Spotlight

The PWCF Spotlight series, which appears in each issue our newsletter Spectrum, aims to highlight the accomplishments and achievements of our members. It also provides a platform for people with CF and their families to tell their story.

50 Years of Life

By Greg Foley, Co Dublin

It's funny the things you remember. Back in the 1970s, I was watching the Oscars when John Wayne strode to the podium to present an award. Slightly breathless, he said in his typical drawl: "Oscar came to Hollywood in 1929". After a bit of a gap, he added "So did I." Well, the Cystic Fibrosis Association of Ireland was 'born' in 1963 and...so was I.

Two Transplants Later...

By Olivia Coen

I found it hard to listen to those words, the words you always knew you would hear at some stage, but wanted to avoid hearing for as long as possible. Those words that made you look at accepting your decline in health. "At this stage you should start thinking about the assessment for the lung transplant".

I am a very independent person and have been from a young age. Growing up with Cystic Fibrosis I considered the usual daily routine of taking nebulisers, tablets, etc a small part of my day. To me filling my day with other interests was much more important. CF was something that was always there but I didn't let it define who I was.

The Pursuit of a Dream

By Robert Cook, PWCF, Co Clare

'My name is Robert and I was born in 1984. At three months old I was diagnosed with cystic fibrosis. I would class my CF as being mild as it has never stopped me from living a normal life. Like everyone, my dream was to grow up get married and have kids and enjoy life. I would have to say the beginning of this dream started when I met my wife Sandra back in 2004. We got on like a house on fire and we have stuck by each other through the good times and the bad. We eventually got married in 2010. Sandra and I always spoke about having kids and about the challenges we may face in achieving this dream. I think deep down I was hoping that I would be in the lucky 2% category where we would be able to conceive on our own; my CF was not that bad so I was hopeful, but I think the two of us knew the odds were against us.'

I've Lived a Quality Life Through Sport and Exercise

By Paul Murphy, PWCF, Co Meath

'My name is Paul Murphy and I am a 36 year old PWCF. I am one of five kids, but thankfully for my parents, the only one with CF. A brief outline of my story may be of great encouragement to PWCF, or parents with newborns who have just been diagnosed with CF. It might well show them that there is light at the end of the tunnel. So here goes...'

Being a PWCF

By Kelli Tara Maples, PWCF, Co Dublin

'My whole life I’d wondered would I be a Mammy, should I be a Mammy; I always pictured myself with a baby as a child. I have four sisters and two brothers – I’m the baby of seven (spoiled!). I wanted a job, someone to love me; a house, a family of my own; to me that was ‘normal’ and I just wanted to be normal. I was always worried growing up about whether someone would love me because I had CF, and all that comes with it including the nebs, physiotherapy, tablets, iv’s and hospital stays.'

Life's Biggest Questions

By Dave Spillane, PWCF, Co Kerry

'My name is Dave Spillane, I’m 23 years old and from Co. Kerry. I was diagnosed with Cystic Fibrosis when I was 3 months old. My parents had never even heard of CF and were completely shocked but they did everything possible to ensure I stayed as healthy and active as I could, even if I was reluctant to do my treatments and physio! I was always an active child and can remember winning lots of gold medals for running. As I got older I began participating in more sports, football, soccer, running, a bit if everything. I believe a combination of sports and sticking to the daily routine of treatments has been a huge factor in what has kept me so well throughout the years.'

A Life Less Ordinary

By Patricia Duffy Barber, PWCF, Dublin

'I’m 33, and at the moment I’m keeping well (thank God!) and definitely keeping busy! I’ve written on the different aspects of living with CF, under a few different headings; Growing Up, Transition to an Adult Hospital, College, Work, Day to Day and Getting Involved with the CFAI.'

Cystic Fibrosis Doesn't Define Who You Are

By Bevin Murphy, PWCF, 17

'My name is Bevin Murphy and I am 17 years old.

I am currently preparing for my Leaving Cert. I hope to go onto third level education and study Marketing in DCU. People would often say to me ‘how do you cope with the doing the Leaving Cert and having CF?’ My response is, I cope like any other Irish teenager doing the leaving cert. Yes, I do have a few obstacles as I miss numerous amounts of school, but with that bit of extra help it is extremely doable, be it coming in early the odd morning to go over what I have missed with the teachers or attending grinds.'

I May Have Cystic Fibrosis But It Will Never Have Me!

By Andy Lipman, PWCF, 38

'My name is Andy Lipman. I am 38 years old and I am from Atlanta, Georgia in the United States of America. I was born with cystic fibrosis and lost a sister to the disease three years before my birth. In memory of my sister Wendy, we started a foundation called the Wish for Wendy Foundation which has raised $1.25 million for the Cystic Fibrosis Foundation in the United States. The foundation has events like fashion shows, softball tournaments and comedy nights in order to raise money for a cure.'

Live for the Day

By Rosie Fitzgerald, PWCF, 24

Rosie Fitzgerald was recently awarded a first class honours degree in Applied Psychology, and also won the HETAC award for academic excellence as best overall student in her college. Along the way she found the time to have a lung transplant. She recounts how CF impacted on her studies.

I'm a Very Lucky Person, CF and All

By Katie Moore, Milliner, Artist, Traveller & Fundraiser

I was diagnosed with CF when I was 6 months old. When people ask me ‘what is it like living with CF?’ I sometimes think ‘what is it like not living with CF?’ I don’t know any different, this is me, I’m 24 years old and have always known I have CF.

I’m a very positive person. I look after myself really well, I don’t drink or smoke, I eat very well, I run or cycle everyday, and I take all my medications. I’m determined to keep myself as healthy as possible.

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