A transplant is not an option
I was in peak physical condition and now I cannot walk up my own stairs. I cannot take a long shower. It is frustrating.
But I am getting such a buzz out of Breathe Boardwear. It gets me up in the morning. My father retired last year and he has set up the company with me. We call it “Breathe” for obvious reasons. I design board shorts, bikinis, vests and equipment for wakeboarding. We do a lot of T-shirts and hoodies as well. I design them and my father is the business brain and we have a great team.
I used to spray paint everybody’s board when we were on tour and if you gave me a pair of white shoes I would draw all over them. Shoes are still my big interest. At the moment it is all online but we will open shops in the States. I never wanted to make a profit from CF so 5 per cent of the profits are going to CF charities.
I know I will never get back wakeboarding. I miss it every day. But it’s a case of better to have loved and lost than never to have loved at all. I am a very realistic person and I do not expect to wake up one morning and be better.
But for CF in general things are improving and I am optimistic that they will find a cure. For myself, I make a very strong point of living every day to the full. I have made a decision about how I want to live but I don’t recommend that other people don’t take their meds. I am an extreme case.
I know it is hard for my parents especially when I get very ill but they are so supportive. They have been incredible. And it is hard for my 17-year-old brother. They threw an amazing party at home for my 21st birthday last June. I find it upsetting that I cannot travel now but they brought my friends from all over the world to me. It was like the United Nations in our house, just amazing. And they have also let my three best friends (Jill, Conor and Sandy) move into the house. I am so lucky with the people around me.
In conversation with Marese McDonagh