"I'm unbelievably proud of him. Nothing can hold him back" - Paul and Leo's story
Leo was born, and two to three weeks later was diagnosed with cystic fibrosis through the heel prick test. I think Leo’s mum took it better than I did, but we both just wanted our child healthy. Thankfully, technology and medicine is evolving so quickly, so Leo’s future already looks brighter.
The thing that has stayed with me since he was very small was when we were told about the importance of sport and keeping your lungs strong. It’s something I’ve never forgotten.
Football
Football is very much a family sport. I played football with Sheffield United until I was about 18 and got injured. I knew I could use it as a tool to keep him well. When he was about four or five, I enrolled him in a local group called Little Messys where they did little ball games and chased each other around. After a while he started being invited to tournaments and used to run around like a headless chicken. But he was running! After that, we kept it up and made it a part of his routine for fitness.
Being football-mad myself I realised he had a gift, and so did lots of people around him. He stood out. You certainly couldn’t tell he had CF. He was excelling other kids and surpassed everyone’s expectations. He then got the attention of Rotherham United and after a trial, they signed him on. He’s still excelling despite also being deaf – he wears cochlear implants.
Deafness and diabetes
Leo failed the hearing screening as a baby. At first, we thought it was mucus, but we got a second opinion. I knew he could hear some things but because he was so young, he couldn’t explain what he could hear. At the consultation, they played a conversation in a restaurant how I would hear it, and then how Leo would hear it. His was so, so quiet. It was such a difficult decision to make – whether he kept the little hearing he had, or whether we would get him a cochlear implant. He was maybe two at the time, and when they put him to sleep it was the hardest thing. But now he’s got his favourite music, he can sing, and it was the best choice we made. I didn’t want him to be treated differently.
He's also been selected for a number of England Deaf training camps and if he’s still doing well there when he turns 16, there is a strong possibility he could represent his national team, which is a really exciting possibility.
I was very conscious of never forcing my interest in football on him, but he really enjoys it. He’s always doing something - our only days off are on Saturdays and he does training or takes part in matches every other day of the week. If it wasn’t football though, I would encourage him to do another sport to keep him well.
He’s doing really well, I’m unbelievably proud of him. Nothing can hold him back, despite everything he’s had to face, though I've raised him to make sure he knows how to ask for help if he needs it. His mother passed away, and two years ago he was also diagnosed with type 1 diabetes, not related to CF. He’s been doing his own injections from the age of nine. He’s taken everything with his health head-on and uses sport as a release.
The challenges come when all of his conditions combine. Diabetes is really tough – it can change to a worrying reading in the space of half an hour. And everything clashes because with diabetes you need less sugars, and with CF you need high calories. At the moment we’re on a nice even level and we both don’t think too far ahead. Leo knows how to deal with it and sport helps keep him level.
Growing older
I don’t like to use the words “life-limiting” because times are changing and you can live a relatively normal life with CF now. I am aware things can change very quickly, and at the drop of a hat he could end up in hospital, with me having to sleep on the floor next to him for a couple of weeks.
He’s 12 now and is on modulator therapies, luckily has had no Pseudomonas, and has been keeping really well. He’s very tall but he’s growing and putting on weight with the modulators. His coughing is quite limited now as well. The test will come when he gets to his teenage years because kids just feel invincible at that age. Parents have to get on with it, but to put it this way, Leo could make my life a lot worse.
