Chesterfield girl who has been through 14 heart ops in seven years spurs family friend's run for charity

Emillie Taylor has had 14 operations since she was born with a congenital heart defect seven years ago. Her dad Dan talks movingly about her ordeal in a video released by the Children’s Heart Surgery Fund in support of this weekend’s fundraiser.

Family friend Shane Duffy will compete in the Manchester Marathon on Sunday and has already raised £9,383 in aid of the charity which helped Emillie’s parents when they needed it most. He admits that he doesn’t like running and found the training very hard. Shane, who lives in Derby, said: “I started to think about raising money for charity; it took me back thinking about the challenge that Dan and his family had with Emillie. This is a way of repaying Children’s Surgery Heart Fund for the support that they gave them and to let them know we care.”

Dan, who has known Shane for more than 20 years, said: "The fact that he's put himself through this absolute gruelling torture to raise some money for this amazing charity who have supported us so well is fantastic. I'm super proud that he's doing it and I really hope he can raise as much money as possible."

Emillie is Dan and his wife’s youngest child. When they found out that they were expecting her they weren’t anxious about going for a scan as they had two healthy daughters. Dan said: “Halfway through the scan, they started to take a lot more interest and a lot more time than they usually would. You could see they were getting a little bit concerned. A second person came to look at the scan and you could see clearly something wasn't right, they obviously picked something up that was quite serious.

"Our life and our world fell apart. We were taken up to Leeds for a specialist scan to have a look at the diagnosis and unfortunately they did confirm that Emillie had got a very rare heart condition, hypoplastic left heart, which isn't curable. It’s very serious, the chances of survival are very low at birth. We were given some heartbreaking and terrible news and we were asked to go away and make a decision on how we wanted to proceed. We made the decision to try and fight for our daughter to be born.

"She was born in Leeds…I don’t think I’ve ever seen so many people in a birthing room in my life. When she was born we had a few minutes with her to hold her and then she was taken away from us.” Scans revealed that Emillie needed the first op of her life within 24 hours.

Since that initial operation Emillie has undergone lots of open heart surgery and made multiple trips to Leeds. She had her last operation in the summer of 2023. Dan said: “After the summer holidays she had her first full term at school without having any time off which was incredible. She is doing really well – I’m really proud of her.”

Dan is grateful to the Children’s Heart Surgery Fund which supported his family through the hardest time of their life. He said: “A big smiling person came into the ward with a little bear for Emily to say that she had her heart surgery and came and chatted to us and gave us loads of advice and information. When we were in Leeds, we were fortunate to be placed in Eckersley House which the Children's Heart Surgery Fund donate into - being able to stay in the grounds of the hospital was amazing. It allowed us to have our other girls come and stay with us at weekends.”

To donate to Shane Duffy’s fundraising for the Children’s Heart Surgery Fund go to www.justgiving.com/page/shane-chsf