“I’ll always wonder why I wasn’t diagnosed sooner” – Simon’s story

Becoming a dad

A few years ago, me and my partner were trying to get pregnant and nothing was happening. It was just one of those things. We kept trying for around 18 months and then decided it was time to talk to a doctor. They put us through to the IVF clinic where they ran multiple tests, and those tests showed that I had markers for CF. I was baffled because I’d never been diagnosed as a child - I was 41! I went for a CT scan, did a few more tests, and eventually I was officially diagnosed with CF in 2022.

We have subsequently been lucky enough to have a little baby. She’s one and was born on the 18 December 2023. When she was born, she had the heel prick test and I was really conscious of how I didn’t get that. 

My partner was also tested before, and we knew she wasn’t a carrier, but I still found myself really worried about her having a rare form of CF like me. I didn’t want her to suffer in any shape or form, and was relieved when it came back clear. I’ll always wonder why I wasn’t diagnosed sooner, so I was grateful to see her get the test and know it’s a lot less common for CF to be missed now.

Getting used to a CF diagnosis

I now have a CF clinic where I get regular checkups. They’ve also looked closer at my genetics and found out I have some very unique markers which is probably why it was never picked up before. 

I was always told I had asthma and I’ve had to have various steroids and pumps over the years. So those symptoms were probably my CF, mistaken for asthma. I used to put all the phlegm I used to get down to a day-to-day thing. But now with hindsight, it all fits in with symptoms I’ve had over the years.

It was a bit of a shock at the time. It was something I wasn’t expecting but I’ve gone through a lot in my life anyway, and now, it’s just something else I have to deal with. I had heard of CF before, but didn’t know all the details, and obviously never thought I would have it. I know lots of people don't reach the age of 40, so I’m very aware of how lucky I have been. 

Running the London Marathon

In April 2025, I ran the TCS London Marathon in aid of Cystic Fibrosis Trust. This was the biggest challenge that I have ever faced and loved every minute of it.

Running the London Marathon was one of the most rewarding and emotional experiences of my life. It was the most unforgettable experience, made even more special by taking in the iconic landmarks along the route, from crossing the start line, running over Tower Bridge, to Big Ben and the incredible finish on the mall.

The atmosphere was electric, with thousands of spectators cheering us on, lining every mile of the streets, and lifting our spirits throughout the course. 

The heat on the day of the event made it especially tough, with every mile much harder than anything I had experienced in my training but knowing why I was running and who I was for kept me going to the end. 

After crossing the finish line, I was overwhelmed with a mixture of exhaustion, pride, and joy, and all I could think about was how much I couldn't wait to see my partner, family, and give my daughter Ava the biggest kiss and hug.

I was incredibly proud to run in support of Cystic Fibrosis Trust, whose encouragement and presence along the route gave me a real sense of purpose.