“Harvey is 60, just like Cystic Fibrosis Trust, and it’s been quite the milestone”: Harvey and Hazel’s 60th anniversary story

My parents were told I had cystic fibrosis when I was 11 years old and my brother Harvey was 12. Sweat tests were carried out because we both had recurring chest infections, but life was great and we didn’t really know the seriousness of the condition until we were adults. 

Our amazing mum was bringing us up on her own at the time of diagnosis and told she would probably lose both of us before we reached 19 years old. This must have been devastating for her.

Mum was always positive and tried not to have our young lives surrounded by CF. We were very lucky to both manage on oral antibiotics and physio until I was in my 20s and Harvey in his 30s.

Our school years were only interrupted by the odd chest infection, and the teachers and all our friends were very supportive. Harvey was really well at that point and loved football, playing for Acton Cleaners. He was also a disco dancing master and as time moved on, he could go clubbing and dance all night. Harvey also competed in the local cross-country race. Over 200 ran and he came 99th, the only one in our school to finish in the top 100. Not bad for a young boy with a chest condition!

It was the late 1980s when I started going into hospital for intravenous antibiotics. This was before we knew about cross infection. They had a large respiratory ward with 10 to 12 patients, sometimes 3 or 4 of us with CF. We could spend time together in the TV room, chatting about our condition and other things. It helped to feel not so alone and isolated. Of course, we couldn’t do that today. In the early 1990s they started separating us as B. cepacia was on the rise and spreading fast. It felt pretty grim at that point. I remember Mum going to a few funerals of young adults who had caught it around that time.

“Life with CF has many complications, heartaches, and difficult times”

I moved to Scotland when I was 32 to spend some time with my dad and Harvey. I was then diagnosed with B. cepacia. It was devastating and the chances of survival were so slim. But with intensive treatment I finally got the all-clear about a year later. The hardest part was not being able to see Harvey for all that time. Life with CF has many complications, heartaches, and difficult times.

When our mum was 62, she completed a skydive for the Trust and raised over £500. She has raised money at many other events but to do a skydive at that age – I was so proud.

I am definitely one of the lucky ones. Not only getting to 58, but being surrounded by wonderful family, friends, my husband Gary and our little dog Bonnie, making it all not so scary.

I would find it extremely hard to cope without Gary. He is such an amazing support, particularly when I’m unwell. Preparing and administering intravenous antibiotics when at home, hospital visits, walking Bonnie, all the housework and unlimited cuddles. He makes me laugh every day.

I have been fortunate to be able to work up until last year, although the later years have been part-time. As we hit the pandemic I was made redundant, like so many others, but I couldn’t just go out and get another job or work in a supermarket. I’m very independent and did not want to rely on my husband (though he didn’t mind at all). But the stress of it all caused a lot of anxiety. I know lots of other people with serious health conditions went through the same and it was awful.

However, I’m pretty tough – I’ve had COVID twice, pneumonia twice, flu and pleurisy and I’m still here! Many people don’t really see how CF can affect our whole body, it’s a hidden illness, and like so many others, I only go out and about when I’m fit and well, so the difficult times are not really seen. 

“Harvey is 60, just like Cystic Fibrosis Trust”

Like most chronic lifelong conditions, it comes with extra challenges. I have CF diabetes and many other symptoms and side-effects that come with taking a lot of medication, particularly steroids. But thanks to the advancements in treatment Harvey and I are still enjoying life and still making the most of every moment. 

Modulators have also been incredible. Harvey and I were not able to have Kaftrio which I understand is amazing, but we are both on Symkevi and Kalydeco which has been great for us. Harvey is 60, just like Cystic Fibrosis Trust, and it’s been quite the milestone.

Looking back, one of my abiding memories was when I was 18 years old. Mum and I went to a support group for parents with children who had CF. After chatting for a while, one of the mums asked me how old my child was. I explained “I’m here with my mum, I have CF.” It took a while for her to absorb this and then bombarded me with questions, clearly emotional and full of hope. Before we left, she said that in meeting me she was more optimistic that her little girl might actually get through her teens and have a future. It was an emotional moment for both of us and hard to fight back the tears. A diagnosis of CF in the 80s didn’t need to be so dark and daunting. 

I’m starting to go a little rusty now but have an amazing CF team at the Queen Elizabeth Hospital in Glasgow looking after me. We also have the Trust watching our backs, helping to raise money, supporting research and trials, keeping us informed and helping us stay in touch with each other. I attended Cystic Fibrosis Trust’s 30th anniversary at St James’s Palace in London all those years ago and as Harvey and I live and breathe, today and in the future, it is testament to the hard work and dedication of everyone at Cystic Fibrosis Trust.