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Growing up with cystic fibrosis

It's the 31st July, 1987. Shortly after being born, my parents are told quite possibly the worst news imagined. 'Your son needs emergency surgery and has 10% chance of surviving the night.'

I was born with cystic fibrosis and in turn, a blocked bowel. After hours of surgery, I emerge with an ileostomy (a bag) and my parents were told I probably wouldn't have long to live. Hell of a start if you ask me!

The obvious reaction to this news of having a lung disease would be to wrap me up in cotton wool. My dads best friend at the time was Cardiff Psychologist Brian Tew. His main research papers studied children with Spina Bifida and family members affected by it. Brian was an incredibly intelligent man and really was a champion for the 'Mind Over Matter' approach.

He'd always said to my parents to think positive about the outlook for my life as that's all they were in control of in that moment.

At age 2, we were on holiday in Dallas and met Dr.Bob Kramer who was the specialist Paediatric Cystic Fibrosis Consultant. He had thousands of patients across different conditions but CF was his main area. His advice to my parents was to run my legs off until I couldn't run anymore and then pick me up and do it again. Why am I telling you this?

Well I put a request on social media about topics people want to learn about and Jermaine Harris and a few others wanted to know;

'What shaped your mindset in the early primary school years, 5+?' - Jermaine Harris, Cardiff (and others)

So here we go...

Dr. Bob set the ball rolling but I was also lucky to have two older brothers and a sister to push me, chase me and force me to exercise non-stop.

When I started school, I didn't think I was any different to any of the other kids (apart from a bit nuts). All I knew was that I had a big scar on my tummy. I used to tell my friends it was a shark bite. That worked up until around 9-10 before they got wise to it. I wasn't treated any differently but I had to take my Creon (enzymes to digest my food) at lunch time. The teacher would give them to me and I'd do my best to hide them from my friends. I didn't know much about cf at that young age but all I knew was that no one else was taking them, and I didn't want to be any different!

Every child wants to be liked and I think anyone would be lying if they said they didn't want to be the most popular kid in school. I knew I loved sport but I also just loved being competitive. I owe that to my brothers. The teachers in school had been told by my parents to not hold back when it came to exercise. The more the better. When it came to sport, in particular the school sports day, I had this desire to beat everyone. I think a lot of this determination came from always losing to my brothers at home so this was my chance against kids on a level playing field, so to speak.

I'd say it was around age 6 that I was becoming more aware of cf. Having to take time out of school to go to appointments made me understand I was different, no matter how hard I tried. I remember doing lung function tests and back then it was the 'Peak Flow'. I remember the doctor at the time explaining the numbers to me. Something along the lines of 'the average child should be 'x' so if we get near that it's great'. I remember thinking 'What the hell? I want to be way past that!'.

So that's when cf really started pushing my mind. I knew the sports field was where I was going to show I was better than anyone else. I had something to prove.

That feeling I got winning the sprint on sports day was the best feeling I'd ever had. Me and my best friend Marcus were neck and neck. We both wanted to win so badly. I pipped him to the line. I never wanted to lose. I also never wanted to be known as the kid who's got cf. I wanted to be known as the fastest kid.

Obviously, when I talk about physical performance, especially at such a young age, genetics has to come into it somewhat, however I believe mindset is learnt from a young age. Being male, you're taught to be tough and I don't think that's a bad thing. It's just also important to know that when you're struggling mentally, that's ok too and doesn't make you any less of a man.

As you can see, I got the bug for sport early and also got the bug for winning. I truly believe that sport offers so much in terms of mindset. I had to cope with losing early with my brothers (even though I'm no better at it now). I went on to win the school cross country race early, beating students older than me and then the County Championships and then the National Championships but I'll save that story for another day!

The major problem which still hasn't been addressed

There was an incredible feeling about beating what my doctor described as 'normal/average' children, when I was on the sports field. When I think back to how it was phrased (and still is) at the hospital, I start to understand a major problem which still hasn't been addressed to this day.

Whilst I totally understand medical professionals needing a marker for what's 'average' when measuring lung function, it's one of the things that as a child, sticks in your head. You're aware you have a disease, you're doing your best to 'fit in' and not be different yet you're being compared to what's described to you as 'average children'. It's also mentioned that you're almost not expected to reach/surpass those levels. That's before the 'average life expectancy' is mentioned but I'll definitely leave that for another blog post.

You're also told at a young age and throughout adult life that a plateau is the main objective when you're looking at your graph. Let's get one thing straight before anyone assumes I'm some sort of genetic freak - I have the DDf508 strain of cystic fibrosis (the worst and most common), I've lived with digestion problems all my life and survived two life saving operations. I haven't had it easy. I've had to be tough. There's no other choice. This may seem hard for some, but it's the truth. We need to change the mindset of these children and encourage positive talk.

At 33, I'm a World Record Holder and have succeeded in challenges that any 'average' person would never attempt. That's not because I'm 'genetically gifted', it's not because I'm 'lucky', it's because I've worked bloody hard and haven't given up on the hopes of being the best at what I do.

I'm not listing my accomplishments to gloat, I'm doing it to show what's possible. In the hospital environment, everyone compares my results to that of an 'average man of my height, weight and age'. In work mode (in the gym with my coaches), we're comparing my performance to the World Records I'm attempting next year. That my friends, is a huge shift in mindset but is completely possible when you're surrounded by the right people. It also doesn't happen overnight, it comes with time and a lot of practice.

To start though, let's stop talking about 'average expectations' of someone with cystic fibrosis and start talking about 'possibilities' for children/adults with cystic fibrosis. We don't have to be 'average', we can do better.

So in answer to Jermaine and all the others who asked, I was pushed hard by my family to be tough, but I was tougher on myself and was never happy with any performance until I was on the floor. I'd never leave anything in reserve, I gave it my all. I'm still doing that today.

We, as a community, need to use better language to these children. I promise you, if I can do it, anyone can.

Some of my top tips for parents of cf children;

  1. Spend less time in 'CF groups' on Facebook - they can be full of negativity and you'll soon find yourself down a dark rabbit hole thinking the whole world is against you. I've been here myself!

  2. Use positive words of encouragement even in the simplest form of 'Yes you can'.

  3. Don't believe that your child is limited because of CF. If you believe they can do anything, chances are, it will rub off on them too.

  4. Exercise with your child. Most of you will agree (I hope) that exercise is a MUST for any child with CF. If you don't exercise, why should they? Remember I never wanted to be different, neither do they!

  5. Push them. Even I get days where I don't feel like it, then I get a text from my coach to give me a kick up the arse. We all need that encouragement from time to time. Never use the line 'You must do it because you have CF'.Instead try 'Let's just have fun and enjoy it' or even turn it around completely so it's them helping you - 'Can you help me exercise today?'

Let me know how you get on and please feel free to share this post with anyone you think would benefit!


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