"I want to raise as much money as possible and inspire future kids with CF" - Henry's story

Tell us about what your life has been like growing up with CF

I was diagnosed with CF when I was three years old. I was in and out of hospital as a young child, but haven’t had any admissions since I was around seven years old. 

I’ve never made CF a big thing in my life, and don’t like to use it as an excuse to not participate in anything. I regularly go to the gym, and my parents have always encouraged me to play sports, such as football and badminton.

This is not to say that CF hasn’t impacted on my life. I’ve had to miss out on certain activities with my friends involving still bodies of water like open lakes and hot tubs, due to the risk of Pseudomonas infections. CF has also prevented me from being spontaneous on many occasions, because of my treatment and medication requirements e.g. a last minute invitation to a friend’s house wouldn’t be possible, as forward planning was always needed to ensure treatment was completed.

I have always worked very hard at school and realise that I have been fortunate to remain well enough to pursue my goal of a career in medicine. I remember a time when my Mum had a sad interaction with another parent of a child with cystic fibrosis while I was in hospital. My Mum asked if her daughter was sitting her GCSEs, to which she laughed and said she didn’t even go to school because of her poor health. This was a frightening moment for my Mum because she realised how much CF could potentially impact my life.

How do you keep well?

I’ve been lucky to benefit from improvements in treatments for CF, like the introduction of smaller nebulisers and modulator drugs like Kaftrio. My lung function has always been pretty good, but taking Kaftrio has definitely helped me remain well for the past few years that I have been taking it.

I’d say that a combination of treatment discipline, commitment to regular exercise and a good diet have helped me to stay well. These factors are fundamental parts of my routine, and keep me healthy so that I don’t feel defined or constrained by my condition.

I don’t hide my CF but people are always shocked when they learn that I have it, and all the things I have to do in the background to keep me well, e.g. nebulisers and medication. I take this as a huge compliment because it reinforces to me that the effort I put into my regular treatment regime is worth it.

Life isn’t always straightforward and having to also factor in my treatment regime can become very challenging at difficult times. When I was studying for my A-levels, my Dad sadly became ill with cancer and passed away very quickly. This was devastating to our family. I lost motivation to do my treatments or go to school but I dug deep and persevered, as I didn’t want to let him down and knew that this is what he would have wanted me to do. My Mum and brother are my support network now, and I am very lucky to have them.

Do you think having CF impacted your choice to study medicine?

Being around hospitals so much, I know what it is like to be a patient and how important it is to be listened to by the medical team. I’m also really interested in human biology and conditions such as CF. 

It’s been a big adjustment going to university. I have to do things independently and I don’t have my Mum and Dad reminding me to do my treatments everyday. Luckily, they prepared me well and before I left home I was doing everything myself - you just have to give yourself an extra 30 minutes in the morning and evening.

Getting into medical school is a tough challenge for anyone and balancing that on top of daily exercise and treatment regimes, only makes it even harder. It can be done though, and I want my story to inspire young people with CF and their parents, while proving that this condition doesn’t define who you are and what you can achieve.

How is the training going?

I was supposed to run the London Marathon last year, but I tore a ligament in my knee playing football a few months prior to the event. I underwent ACL reconstruction surgery at the end of March 2025, and since then I’ve been intensely rehabbing to get back to where I was before the injury.

Tackling a marathon only 13 months after ACL surgery is a daunting feat, but I wanted to take on the challenge as I am so motivated to raise money for this great charity. Training is going well, I’m doing what I can and trying to avoid injury where possible. 

I was amazed by how many people with CF are also running the marathon. I’ve been using TikTok and social media for fundraising and have had a few people with CF and their parents reach out to me online and send lovely messages. Your donation, big or small, makes a real difference and funds life saving treatment for people with CF. I want to raise as much money as possible and increase the awareness of CF so that I can inspire future kids with CF and help them realise that they don’t need to fear their condition.