“When I look at Philippa, I'm always hugely inspired by the positivity she’s shown in very difficult circumstances” – Nick and Philippa’s story

Growing up with a sibling who has CF

My (Nick) sister Philippa has cystic fibrosis. There's three of us; Adam is my older brother, Philippa's in the middle, and I’m the youngest. My mum sensed that something was wrong when Philippa was born in the 1980s. She’d recently read about CF in a magazine and she told the doctors that she thought her daughter might have CF, but they just dismissed her and thought that she was just a worrying mother. It took about six months for Philippa to be diagnosed with CF.

It was a difficult time for our family when she was finally diagnosed. The doctors told my mum not to worry because she might only live to the age of 13. As a parent now, I cannot imagine how difficult that message would have been to hear. It's something they acknowledged at the time, and they weren’t sure what the future would hold for Philippa.

Philippa and I are only 19 months apart, so not long after my mum became pregnant with me, she signed up to be the first person in the world to have chorionic villus sampling (which is antenatal testing) to find out if I had CF. The story had a lot of media attention as it was a significant milestone for diagnosing CF. The results came back confirming that I didn’t have CF. 

When we were growing up, I remember Philippa having physio from our dad every morning and evening, and having regular hospital visits. She also had nasal polyps which had to be removed most years, which meant she had about 22 operations. It was always quite normal for my brother and I to have a sister that was in hospital having operations.

My parents encouraged us to take part in different sports, due to Philippa’s CF. So we did a lot of swimming, which is great for your lungs. I remember a scary time when Philippa had a really heavy nose bleed and she had to go to hospital. 

It was just after my (Philippa) 13th operation, and I ended up back in hospital due to such a heavy nose bleed. It was a scary day for us because I lost a lot of blood and nearly had to have a blood transfusion. But I remember that I was trying to stop the nose bleed with my face over the sink and Nick brought me a chair and a radio so that I wouldn't get bored, which was really sweet of him.

Running my first London Marathon

I (Nick) ran my first London Marathon in 2011. I wasn’t a keen runner then, but I managed to raise about £5,000. The training for that race was really challenging, and I remember being very emotional and getting halfway when my legs started seizing up. If I wasn't doing it for Cystic Fibrosis Trust I probably would have stopped, but I pushed through and made it to the finish line.

I ran my next marathon in 2018, and there was a lot in the news about “the wonder drugs” Orkambi and Symkevi. I remember that being a really big moment, and then they became available on the NHS and that really transformed Philippa’s life.

I (Philippa) was quite sick, getting more chest infections, and taking more antibiotics each year. I had a lot of complications with my health. I started on Symkevi, and I didn't notice much of a difference but then I started taking Kaftrio in 2021 - when I was 33 weeks pregnant. It was not recommended unless I really needed it, but I got to the point where I was getting more and more chest infections and I needed extra help for the last bit of my pregnancy.

I remember I suddenly felt so much better. I could breathe and no longer had a cough at night. My life is more stable now, I’ve been taking Kaftrio for four years and I do still get chest infections and was quite poorly when I was pregnant with my second child, but my health is a lot better and I don’t have to worry about catching a cold and then becoming seriously ill.

Taking on the 2025 London Marathon

I (Nick) was on the waiting list and got a last minute place to run this year’s London Marathon. This will be my 8^th run for the Trust, including the virtual run I did in 2020. The total raised so far is about £22,000 and my goal is to get to 10 London Marathons - when I hit that goal, I might just keep going! 

As I signed up later I've not had the chance to do extensive training, so this year my focus will be to enjoy it and soak up the atmosphere rather than chase a time. I'll stop when I see my wife and baby and will also stop to and thank everyone from the Trust when I see them along the course. It's an incredible event and it's so emotional, you can really feel the individual stories of all the runners and it truly carries you. Philippa is hoping to come along with my nephew this year.

I'm (Philippa) really proud that he has done this and raised so much money. It's a crazy achievement, both the number of marathons he's done, and the money that he's raised for cystic fibrosis.

Hopes for the future of CF

I (Philippa) think the Trust have worked really hard to get Kaftrio, Orkambi and other life-saving drugs for people with CF on the NHS. But we still need to keep going to find life-saving medicines for the people who experience bad side effects and for those that can’t take these medicines.

I (Nick) agree with Philippa, there's still a long way to go, so I'll keep doing my part and running the London Marathon to raise awareness and money for cystic fibrosis. I’m always inspired by the Trust’s campaigning work for new medicines and seeing the impact it has when they’re made available on the NHS. It really inspires me to keep running and raising funds for the Trust.

I can see how the quality of life has improved for people with CF, and when I look at Philippa I'm always hugely inspired by the positivity she’s shown throughout her life in very difficult circumstances. 

If you’d like to be there to show your support for our amazing #TeamCF London Marathon runners, then you can sign up to join our cheer crew by emailing the Events team.