“We had an understanding of each other no one else could ever have” – Mark and Matthew’s story

Our diagnosis

I was born in 1984 in Norwich - and after a simple heel-prick test, became one of the first in my area diagnosed with cystic fibrosis. Back then, CF was a word filled with uncertainty, fear, and limited hope. 

I grew up alongside my younger brother Matthew, who was born four years later. My mum did a test to see if he would have CF. The result was negative and they were so relieved, however, when Matthew was born he was very poorly and blue lighted over 100 miles to Great Ormond Street. He was diagnosed with CF shortly after. 

My Dad vaguely knew someone who had CF. My Mum had also heard of it, but neither knew the consequences of the diagnosis. Now that I'm a parent, I can now understand how difficult it must have been for my parents to be told that their child had CF.

My brother, Matthew

Matthew and I grew up in the same household until I was about 19. We shared everything: a home, games of football, the experience of hospital visits, treatments and infections. 

Matthew’s CF impacted him more than it did for me, so I was more fortunate. Matthew and I had the same genetic mutation, but he had other problems, mainly a poor appetite, which impacted his lung health, and eventually led to overnight feeding. As I got older, I became laser-focused on working, maintaining my health and planning for a family, but Matthew wasn’t as focused on that as I was – we had different priorities. 

Cross infection was understood a bit differently as I got older. I wanted to see Matthew, but didn’t want to pick up infections or pass any on. It affected our relationship – we were quite close and then weren’t.

I was planning to have children and had to look out for family, and he wasn’t very responsive, so we drifted apart and didn’t have that connection anymore. He got more unwell and he ended up in hospital with pneumonia and was there for four months. We were unsure if he was going to be okay, but I wanted to see him.

I eventually went, wearing a full gown and mask, and didn’t get a lot of answers until doctors told me he didn't have long to live. That was the first time we had heard this prognosis, so it came as a huge shock. I told my parents and got everyone up that day and he passed away five hours later. He was 30 years old. I was grateful to be there when he died, but it left me with huge regrets. 

Matthew was challenging – things had to be on his terms, but that’s who he was. I felt like I’d left him behind because I was putting so much work into staying well and having my own family. I have mixed emotions that come with that, but it leaves me with regrets on the years lost between us both.

Having a sibling with CF was a great support system, and looking back it was something I took for granted. We had an understanding of each other no one else could ever have. I hadn’t appreciated it until Matthew was gone. Face-to-face contact is everything, and we were robbed of some of that due to the nature of CF.

My health

Looking at CF forums I’ve realised how lucky I’ve been with my health, apart from when I went to university and struggled a bit. I’ve always been active, which helps somewhat, but I’ve also not had a huge number of IVs and only one hospital stay. I’ve worked hard to maintain my health, and my mum worked hard at instilling that in me from a young age. 

Having one remaining son with CF must have been tough for my parents during the pandemic. Not only did I lose my brother the year before, but then I started to think whether it could be me next. I’d already doubled down on keeping well but it scared me a lot and made me aware I needed to keep doing the right thing. 

Kaftrio has helped hugely with that and has built on what I put in place. I started taking it in 2021 and any mild cough completely disappeared, and I didn’t produce any more sputum. I’d also previously lost my sense of smell which I’d tried to treat with steroids and then suddenly I could smell again. I’m not sure if that’s an intended side effect, but obviously the medication cleared something.

I don’t think of CF as a huge part of my life anymore, I’ll always be aware of that but it no longer dominates my everyday life. I take a small amount of tablets compared to what I used to, but it took a lot of hard work just to get to that point in my life. It doesn’t take up as much headspace either, but it’s still always there. I religiously keep my chest clear, and only have appointments every four months so the impact on quality of life is low.

I recently completed a Hyrox competition in London, coming in the top 10% in the runners across the competition and finishing in 1hr 14 mins (solo event). I then did a similar local competition the following week and finished fourth overall. When I was younger, doing something like that would have been out of the question. I consider exercise an equally important part of my healthcare journey as everything else. I see and treat it as medicine.

Becoming a father

I had twin daughters through IVF who are now eight years old. They understand the visible bits of CF, like taking medication and once they’re older I will be able to explain it. They also know about Matthew and that he died because he was unwell, but don’t think they have made the connection between that and me now. I don’t want them to know about that yet because they’d only worry. One daughter is a carrier, and the other isn’t.

I look forward to telling them more about their uncle when they’re older, and for them to have a greater understanding of CF, and how important it is to try and keep as healthy and fit as you can.