'My daughter's heart condition will never be cured but it doesn't hold her back'

When Mathew Mariani pounds the street of London on Sunday for the 2024 Marathon his biggest cheerleader supporting him from the sidelines with a big smile and a wave will be his daughter Esme. The three-year-old was walking around their Swansea home saying "me coming too" as they packed for their trip to the capital, and she can't wait to see her dad take part.

It is with an enormous sense of pride that Mathew and his partner Emily watch their daughter doing all the normal things a child of her age should be doing, because when she was just 10 days old the outlook was very different.

After a relatively normal pregnancy, the couple thought everything had gone to plan as Esme was born on New Year's Day 2021.

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There had been a little bit of concern about the baby's heartbeat during the latter stages of Emily's pregnancy, and there were some extra checks and scans done at birth but nothing was picked up and Esme and Emily were allowed to go home.

But the new mum became concerned when she had to waken her baby up for a sleep and she was being sick regularly.

"I thought I was being a paranoid new mum, but I knew that something wasn't right," said Emily. "We had got home from the hospital on the Friday and by the following Saturday I was really concerned. On the Sunday I took her to the out-of-hours GP and he said he thought she might have an infection or that it could have been Covid."

The doctor sent them to the hospital where a consultant told them that Esme had an enlarged heart and that they would have to run tests to find out why. Esme was put on antibiotics and sent to a Covid ward as a precaution, and when she responded really quickly to the drugs they became suspicious.

Emily explains: "If it had been an infection or Covid, it would have taken time for the antibiotics to work. They said they were going to do some further investigations and we were totally naive to what it meant. We had no idea so when they sat us down and told us that Esme had a hole in her heart, we were totally heartbroken."

Esme was diagnosed with Congenital Heart Defect (CHD) called Atrioventricular Septal Defect (AVSD) and was moved to Noah's Ark in Cardiff from Morriston for further treatment. She remained there for three weeks and had to be tube fed as doctors worked out the best way forward.

Emily says: "CHD is so complicated and no child is the same. There are around one in 150 babies born with a CHD in Wales every year. Esme will never be cured so it is something that we have to live with and find a way around. We had been totally blindsided because we thought we had given birth to this totally perfect, healthy baby girl but the staff at the hospital and the support we had was amazing."

When Esme was only six months old she had to have open heart surgery at Bristol Childrens' Hospital, and she now has to take medication three times a day to keep her condition under control - but none of this holds her back.

She loves school, playing ball, even skiing and she will be there on Sunday shouting her dad on as he takes part in the marathon to raise money for the British Heart Foundation.

Proud mum Emily says: "We take comfort in raising money to help others going through what we are going through. Esme is amazing too. She takes on every day with incredible resilience and courage. Despite the hurdles posed by her condition, Esme continues to inspire everyone around her with her positive attitude and determination.

"Mathew's dedication to raising awareness and funds for heart conditions like AVSD highlights the incredible bond between a father and his daughter, as well as the importance of supporting vital research and initiatives in the field of cardiovascular health.

"This also isn’t the challenge Mathew has taken on, in 2021 he ran the Great North run for Tiny Tickers, and in 2022 Mathew and some friends walked from Swansea to Bristol in 30 hours for Heart Hero’s. Making the grand total raised since Esme was born almost £18,000.

"I believe that sharing Esme's story sheds a light on the realities faced by individuals and families living with heart conditions but also serve as a source of inspiration. Just like Esme is an inspiration to us. Our story is also helping to train the next generation of midwives. It's a story of love, resilience, and the power of community support."

Mathew, who has raised more than £6,000 through his London Marathon training, has set up a fundraising page here.

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