Colin Clewes, 35, from Oxenhope, West Yorkshire was diagnosed with congenital heart disease when he was 11 days old.
Since then, over the past three decades, he has undergone two open heart surgeries.
Colin’s picture was on display as part of the Keeping the Beat launch event which took place at the Leeds Club on 19th May, 2016.
Colin talks about one of the first times he and his family arrived at the old Killingbeck Hospital in Leeds, where the Children’s Heart Surgery Fund was originally founded by Duncan Walker:
Luckily for me, when I arrived at the hospital a nurse who had just undertaken a placement with the cardiac surgery team in Louisville recognised my symptoms. I was immediately rushed into theatre for my first aortic repairs, which saved my life.
Since then, Colin has had further repairs to his aorta, and had a patch surgically inserted inside the heart wall. He also takes blood pressure tablets to control high blood pressure and to help with arrhythmia.
In the future, Colin may need to have a valve in his heart replacing but hopes this will not be for years to come. Reminiscing on his experiences Colin adds:
I remember a long time ago someone asking me if I would change my condition if I could. As a child I would have certainly said yes. However, when I was asked as an adult, I realised my answer was no, not for a moment.
Everything that has gone before is part of me. Every moment is something I can call upon when life kicks back. The still moments, pauses in conversations with consultants, silences while they do another scan or test. The hardest times have shaped me into believing that I can and it’s down to me getting on with it.
For parents of children with congenital heart disease Colin says:
Give your child belief; with the belief they can achieve anything, they probably will. I am 6’4, 16 stone and far from the weak baby that at 11 days old was in heart failure, fighting to live.
The team at the Children’s Heart Surgery Fund has achieved far more than you realise and have always been there when needed. Leeds and the surrounding areas are lucky to have a charity like them.