"Fatherhood gives me a powerful reason to stay well and keep moving forward” – Carl’s story

Diagnosis

I was diagnosed with cystic fibrosis age three and a half. With hard work and a bit of luck I have managed to stay quite well. I’m regimented with my medication and treatments, and am never satisfied with how well I am. I carry out my treatments properly whilst trying to minimise their impact on my life. I set up all my pills at the start of the month to allow me as much time as possible to enjoy life. 

My parents were pretty clueless about CF – they knew something was wrong when I started eating solid foods. Like many at the time, my local hospital wasn’t really experienced with CF and my parents were fobbed off for two years. After two botched tests I had to go to a hospital in a different county to be diagnosed. My mum tells me the doctor licked my arm(!) and knew straight away I had CF.

From a young age, my parents were very straight with me about the realities of having CF. It’s not normal for a child to have to face their own mortality, but I know their approach did me good because it made me determined and focused on defying CF. I used to wonder how I ever got through things as a child, but now, watching my own son, I see just how incredibly resilient children truly are.

Realities of CF

I don’t like making a fuss over having CF, partly because I know many have had a worse time of it than me. It’s been a constant challenge, but I don’t know any other way. I’ve pushed myself hard to achieve things that would have been unthinkable when diagnosed. I lived and worked abroad in Cyprus, I went to university, work full-time, regularly play sports, and I had a child through IVF.

I’ve found CF a very lonely condition to endure. You can’t meet up in person with other’s who have CF and I previously avoided contact with people with CF and bottled up my concerns about my future. After talking regularly to a couple of fellow people with CF on social media I realised this was the wrong approach. No one else can really know what it’s like. We used to mix in the 80s and there’s probably things I haven’t processed from friends from back then who have passed away. 

I went through a period of depression while my fiancée was pregnant and I was battling with a mycobacterium abscessus infection. I’d accomplished everything that was supposed to be out of reach. I found myself asking—what now? Growing up with CF, we were told to keep our expectations low: don’t think about pensions, relationships, or expect to have children. So when those milestones suddenly became reality, I felt lost. I didn’t know what came next. Seeing a therapist was a turning point - it was so helpful, and one I’d recommend to anyone struggling.

Becoming a father

My fiancée Jenny and I have been together for nine years. From the beginning, I was honest with her about having cystic fibrosis and the challenges it could bring, especially when it came to starting a family. Overcoming CF in the way I have isn’t something you do alone - it takes the support of truly special people. In the last decade, that person has been Jenny. When we decided to have a child, we did intracytoplasmic sperm injection (ICSI) at Guys Hospital and she made the process look easy, though I know it wasn’t. We had our son, Nicholas, at the end of 2018.

We were really lucky that it worked the first time with Nicholas – since then we’ve had two failed attempts and just have to hope we get lucky one more time. My advice for anyone with CF wanting to have a child is not to hang about – Nicholas has been keeping me young, running about after him! It’s been brilliant. It’s also brought me closer to my own Dad, so if you feel well enough to try it, you should go for it!

Nicholas is like me as a child, but healthier. He runs around all day. A lot of men with CF worry about how it affects your health, and I do worry about that in the future, my lung function will go down. Now the drugs are so good it’s easy to get complacent. But having Nicholas gives me another purpose to stay well. Racing and playing football with him all the time means I get lots of exercise!

I don’t know how much my son realises about my CF, but it’s difficult to judge the right time to fully explain it to him. He used to build LEGO nebulisers and pretend to do them at the same time as me. I’ve taken some advice from (the few!) people with CF who are older than me and have kids. Mainly though, I think CF is normalised around Nicholas. We don’t hide anything and he’s seen it throughout his whole life. I do nebulisers and take my pills. He’s asked why I take them and I’ve told him, but he hasn’t asked anything more than that. 

In fact, one of the reasons I ran the London marathon is that when Nicholas learns a bit more about CF, he will remember that I play football with him and I ran a marathon and will see it’s not as all-encompassing as it might seem. But he doesn’t seem worried or fazed by it for now. I’m just like any other Dad.

Modulators and treatments

As medication and treatments have got better, I realised how sick I was. When I was about eight, I was on Children in Need to demonstrate a massive physio bed they had developed – that was cutting edge back then!

I was one of only 400 who got to try Kalydeco when it first came out. It was game-changing, I was 27 or 28 and I could feel it was getting more difficult to plough on with CF and continue to work full-time. Suddenly, it was easier to put on weight and I could be over a cold within a week rather than three or four, and everything got easier. It gave me confidence too. I was living in Devon at the time and I always wanted to live in London and work in a more interesting industry. Within six months I moved to London and haven’t looked back! 

I’d not suffered too much with side effects to medications before taking Kaftrio. I suffered chronic insomnia, dizzy spells, headaches and awful brain fog for a year. I had to come off of it completely for a while and my lung function went back to where it was before. I now take a 30% dose which is much more manageable. I am very grateful to have access to the modulators and am excited to learn that research is ongoing to try to alleviate the side effects in the future.

Running the Marathon

I ran the London Marathon this year because me, my fiancé, and son cheer the runners on every year. I had a little bit of experience, and did the Great South run a few years ago and some half marathons too. I’ve got the bug now and am thinking about doing the Valencia Marathon in December.

The day was brilliant, and I managed it without injuries, and got to see my family come and cheer me on. My fiancé is hoping to do it next year, so that might be my time to cheer her on instead.