“I never thought running a marathon would be possible”: Nell’s London Marathon story

I’m Nell, I’m 22, and I'm a student studying hospitality and tourism. I’m currently on a placement working at a hotel in Studland Bay. I absolutely love my job and it is something I’ve wanted to do since I was really young. 

Growing up with CF

I was diagnosed with CF at eight years old. My older brother Charlie also has CF, and he was diagnosed at 10. Growing up, in a way it was quite nice having somebody else in the house who was also doing all the physio and taking the endless medications - we just knew without words what each other was going through. Obviously, we’d rather neither of us had CF, but we’ve always been really supportive of each other. 

When I was younger, I was in and out of hospital quite a lot and it really affected me mentally. I was like, ‘Why me? This is so unfair’. I didn’t want to have to be pulled out of school for doctors’ appointments, or to not be able to take part in certain activities because of my health. 

I remember having to give my goldfish to somebody else because we couldn't have the stagnant water in the house and although it seems such a small thing, at the time it really had an impact. I missed a lot of school and I worried how I’d be able to hold down a job that I loved when I was older. 

I started taking Kaftrio in September 2021, at a similar time to my brother Charlie. We have both felt amazing benefits. The difference between what I was like when I’d just been diagnosed and was going through school, to how I am now is huge. The people I've met more recently at university almost don't know that old me. I'm just so grateful for how my life has changed. 

The runner’s high

My dad ran the London Marathon a few years ago and I loved the atmosphere. I knew I’d love to run it myself one day but never really thought it'd be possible. But after starting Kafrio, I was like, right, this is achievable; this is the goal!

I was lucky enough to get a place on Team CF and I am actually really enjoying the training and seeing the progress I’m making with every run. I find it really rewarding. Yes there are runs where you don’t want to go out because you’re not feeling it or the weather is rubbish, but once you've got it done, that serotonin you feel and that runner’s high – I love it. 

With race day fast approaching, I’m trying to stay relaxed. I don't want to get all uptight and stressed about it. As long as I'm getting the miles in and I'm keeping my body healthy. I'm not training to be able to break world records. I just want to cross the finish line, whether it takes me 4.5 hours or 4.5 days!

My advice for other runners with CF is to go for it! I used to feel like CF was holding me back; I didn’t think I’d ever be able to run a marathon. I’m lucky that the medication I’m on has allowed me to do these things that I never thought were possible before. I’m proving to myself that I can do anything I put my mind to and work hard for.

I’m running for everyone in the CF community

Cystic Fibrosis Trust have been amazing and the research and developments that have come about as a result of the charity’s efforts has been incredible to see. Kaftrio has made a huge difference for me and my brother, but I know it’s not a cure and some people can’t benefit from it, so I’m determined to run for everyone in the CF community. 

My brother and all my family will be in London supporting me on the day. In the toughest moments, their support will keep me going, as well as thinking about how far I’ve come.

You can support Nell's fundraising here. 

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 11,000 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing. 

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