Running an ultra-marathon for Cystic Fibrosis Trust

Growing up with CF

I was diagnosed with CF at five weeks old after a heel prick test. I think I was actually diagnosed during the first year in which they introduced the heel prick test to the Leicester Royal Infirmary hospital! I was born in November and my Mum got a phone call on Christmas Eve from the hospital saying that I've been diagnosed with CF. She kept it to herself all of Christmas Day and didn’t tell my dad and my three older siblings until Boxing Day, because she wanted everyone to be able to enjoy the day. Looking back, that must have been so tough for her. 

I had my first lot of IVs when I was 2, and then had them every six months to a year until I was 17. I got really ill when I was 13. I’d grown a microbe bacteria in my lungs and I had IVs for two weeks every three months, for a year.

It was a real struggle as a teenager with CF. You just want to be normal like everyone else but you’re taking 40 plus tablets a day and you always have a cough; it’s a huge thing to deal with as a kid. 

It’s normal now to have a psychologist in your CF team, but it wasn’t at the time, and the whole mental health impact wasn’t acknowledged or well looked after. The other thing I had to deal with as a teenage girl was feelings around my body image. I was so small for so long and I barely put on weight. It meant puberty for me happened a few years later than everyone else; that was hard, especially being at an all girls school. 

Kaftrio has been a gamechanger 

I’m 24 now and started on Kaftrio when I was 20. It has been a gamechanger for me. My mum used to say that she knew where I was in the house because I always had some sort of cough, so she’d just follow the cough. And then I started taking Kaftrio and she found it really weird because she suddenly didn’t know where I was anymore as the coughing had stopped! 

Running an ultra-marathon for the Trust

I’m from a very sporty family and have always taken part in sport. When I was 17, I started running, usually just 2km – so not very far at first. I loved the feeling after running, because the impact of my feet hitting the ground was very similar to the feeling of the physio that we used to do on my lungs. I gradually started to increase my distance and decided to take part in my first ultra-marathon in 2021 after being inspired by my sister and brother-in-law. An ultra-marathon is a running race above the standard 26.2 mile distance of a marathon. The actual race we were supposed to take part in was postponed because of COVID, but we ran the distance anyway – 55km around the Isle of Wight in 7.5 hours. 

At the end of last year, I was looking for a new sporting challenge to be working towards and decided to sign up to another ultra: Race to the Stones. I completed it in July in five hours and 20 minutes. Placing me 13th female and 43rd overall. My mum got really emotional when I crossed the finish line and shed a tear or two. CF has been a huge part of her life too, so to see me doing something like this… she was so proud. When I was born, she was told that I wouldn't make it to 18 so it was a big moment for her too. 

CF has made me a fighter

In the toughest moments of the race, I honestly don’t know if I’d have got through it if I didn’t have CF. With CF, we’ve had to deal with so much from such a young age. It's made me extremely resilient and mentally tough because it's not a question of fighting or not fighting, if I don't fight then I'm not going to be alive. My whole life I've fought to breathe and it was that which got me through to the finish line.

CF has been such a big part of not just my life, but my whole family’s lives. It’s changed how we all see and live life, because we all know it’s not a given. Growing up I was told I might not make it to 40, so I’ve always vowed to live 80 years of life within 40 years and my family have the same ethos. Life is short so we never take it for granted.

Fundraising for the next generation of people with CF

I wanted to raise money for Cystic Fibrosis Trust, because without the Trust it wouldn’t have been possible for me to access Kaftrio, which has made such a difference to my life and many others.

But it’s not a cure, CF still affects me in lots of different ways, and Kaftrio doesn’t work for some people with CF, so research into new treatments is desperately needed. One of the biggest things for me is that I'm not necessarily concerned about myself and my CF, but it’s more about if I were to have kids; I wouldn’t want them to have go through what we have. I hope the next generation can have the benefits of better treatments, to have less hospital stays and for CF to be less of a burden.

To anyone thinking of taking on a challenge for the Trust, whether it’s big or small, I’d say ‘Life is a short script, so just do it!’. We don’t have the privilege of time, so don’t sit around thinking about things; just go for it. 

If you’ve been inspired by Poppy’s story and would like to take on your own challenge, why not check out our upcoming events?

For 60 years we've worked together, sharing moments of frustration, despair and hope, overcoming challenges, and celebrating breakthroughs. Always learning and moving forward.  

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