'I'm only 16 but I've already had open heart surgery three times'

You would never guess that 16-year-old Garyn Jones has a heart condition.

Garyn, from Neath, was diagnosed with a congenital heart defect called tetralogy of fallot at two weeks old. At 11 months, he had his first pacemaker fitted, and has since received a further three open heart surgeries.

Despite having a total of six operations so far, Garyn says he's been able to live his life as normal.

Read more: 'My mum died of a heart attack on holiday when I was 16 - now I want to help others in her memory'

Garyn said: "I've never really felt any different from the other kids, I often forget I have a heart condition until I have to go in for surgery."

When Garyn was a baby his parents were sent home by an out of hours doctor, after they had become concerned about his breathing, but his mum Nicola listened to her instincts and took her son to see their GP. You can read more of our health stories here.

He was then referred to different specialist teams in Wales where he got his diagnosis.

Nicola said: “We were obviously really afraid when we got the diagnosis. The doctors told us not to Google it, they were worried we would scare ourselves. We were also told to watch for him going blue and limp - which was enough to scare anyone."

Garyn's first surgery came just three weeks after he was born.

Garyn Jones, 16, was born with a rare heart condition and has had open heart surgery three times (Nicola Jones)

Nicola said that, despite going on to have five more operations, she still felt nervous every time he went in.

Nicola added "I don't think there will ever be a time where I won't be worried when he has to have surgery, but he's always comes out totally unfazed."

Garyn most recently had valve replacement surgery in 2020, and astonished doctors by being up and out of his intensive care bed just one day after his open heart surgery.

He is a keen swimmer and began doing so competitively with Neath ASC, after being told by doctors that contact sports could present a risk to his pacemaker.

The surgical team at the hospital have dubbed him ‘the swimmer’ and Garyn credits his training routine to his lightning recovery.

"There is no way I'd be where I am today without my swimming. it’s helped me loads – obviously my physical fitness, but the social side has really helped to build up my confidence and I love the competitions.

“The club is really supportive, it’s like we are one big family. I think they were a little worried to start, but they welcomed me in straight away, they know my limits and they adapt for me. It is very competitive, but we all have a laugh."

Garyn doesn't let his health conditions hold him back and has fast become an award-swimming winner (Nicola Jones)

Whilst heart conditions like Garyn’s are invisible disabilities, swimming has highlighted his scars that are a consequence of the surgeries. People sometimes stare, but Garyn isn’t afraid to discuss them.

Garyn said: “My scars are what make me, me. I think they are really cool. I sometimes tell people I fought a shark, but then I will tell them about the surgeries.”

Nicola added: “He’s amazing and takes everything in his stride, we are so proud of everything he has been through, and he doesn’t let his heart condition hold him back."

Whilst Garyn will have more surgeries ahead of him, he won't let that get in the way of the sport he loves, with ambitions to one day make the national Welsh team.

Fergus Feeney, CEO of Swim Wales, said: “We are always inspired when we hear of stories like Garyn’s, what an amazing guy he is.

"Swim Wales has advocated the physical and mental health benefits of swimming for many years, and this is yet another example of how it can help a person excel in life. We wish Garyn, his supportive family, and club the very best as they continue to enjoy the benefits of aquatic sport.”

Head of BHF Cymru, Adam Fletcher, said: “The health benefits of swimming are well recognised. Swimming is one of the few activities that work your whole body.

"Breaststroke, backstroke, front crawl, butterfly and even doggy paddle get your legs and arms moving. This in turn works your back and core muscles. Regular exercise is important for everyone to maintain their health and swimming can be an enjoyable rehabilitation activity for people with heart conditions, following advice from their medical team.

"BHF Cymru is proud to partner with Swim Wales on this fantastic event which will help us fund life-saving research into heart and circulatory diseases.”

Get stories like this straight to your inbox with our newsletters.