Diletta Fileni
EditorFive-year-old heart surgery survivor gets red bench on Swansea Beach — as dad gears up for London Marathon this weekend
A bright red bench has been unveiled on Swansea Beach in honour of a five-year-old girl from Carmarthenshire who was born with a serious heart condition — just days before her dad runs the London Marathon in her name.
Esme Mariani, from Hendy, was born on New Year’s Day with an Atrioventricular Septal Defect (AVSD) — a congenital heart condition in which there is a large hole between the chambers of the heart and only one valve where there should be two.
Her parents Emily Bowen and Mathew Mariani didn’t know anything was wrong until Esme was ten days old, when a Sunday morning call to 111 began a frightening journey through hospitals in Cardiff and Swansea — with only one parent allowed on the ward at a time due to Covid restrictions.
“It wasn’t until Esme was 10 days old that we knew something was seriously wrong,” Emily said. “As new parents we were devastated — I was still healing myself and I just broke down. Mathew and I were perfectly healthy, so it was a complete shock.”
The couple spent weeks learning how to tube-feed Esme at home and how to perform CPR on their infant before her surgery date arrived. When Esme was six months old she had successful heart surgery at Bristol Children’s Hospital, carried out by BHF-funded Professor Massimo Caputo. To the family’s surprise and relief, Esme no longer needed tube feeding by the time she was discharged.
Emily said the experience had changed how the whole family sees life. “Nothing holds Esme back — she’s one of the gang. Despite all the challenges we’ve faced, there is no greater joy than seeing Esme flourish. She has taught us nothing is impossible. Every day I look at her and I’m just amazed by her strength. We are so proud of her.”
The red bench on Swansea Beach is one of 65 being installed across the UK by the British Heart Foundation to mark 65 years since the charity began funding lifesaving research. Each bench tells the story of someone living with cardiovascular disease — a tribute to those who have survived thanks to BHF-funded breakthroughs.
This Sunday, Mathew will run the London Marathon for the BHF, while Emily plans to run the Cardiff Half Marathon in October. Together the family have raised more than £15,000 for the charity since Esme’s diagnosis.
Mathew said: “None of these challenges will ever be as tough as what Esme, and so many children living with congenital heart disease, have already faced. Running gives me a way to raise awareness as well as funds to help children like Esme. If people see me running the London Marathon for the British Heart Foundation and it makes them stop, think, or start a conversation, then that in itself is incredibly important to me.”
Esme will require further surgeries as she grows up. The family are also looking forward to celebrating their wedding later this year.
Rhodri Thomas, Head of British Heart Foundation Cymru, said the Mariani family continued to inspire all who heard their story. “Despite being one of the UK’s biggest killers, cardiovascular disease is still misunderstood or not taken seriously,” he said. “By sharing the stories of people who live with cardiovascular disease on our iconic red benches across the UK, we hope to fund more research which will help us save and improve more lives.”
The BHF says someone in the UK dies from cardiovascular disease every three minutes. Donations can be made at bhf.org.uk.
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