AMY Ball is no stranger to challenge. At the age of 14, the Sheffield youngster has already twice battled her way through open heart surgery – and twice taken part in the Race for Life.
Now she is facing a battle with a difference: for the future of the heart unit that saved her life.
Amy, her mum Alison and the rest of their family in Greenhill are campaigning to stop the closure of the children’s heart surgery unit at Leeds General Infirmary.
It is one of four earmarked for closure under NHS rationalisation plans. Medical experts say treatment would be safer if children’s heart surgery was concentrated at fewer, more skilled operating centres.
But campaigners from the Children’s Heart Surgery Fund have launched legal action to stop the closure – arguing that it will leave Yorkshire with no service at all.
Patients in the Sheffield area would have to travel to Newcastle, more than doubling the length of their journey and putting them out of reach for day visits. They will also lose out on the network of peripheral clinics and cardiac aftercare that Leeds has built up.
Alison said: “We just feel it’s the wrong decision. These people haven’t sat by the side of a cot holding a child with a major heart condition. It’s a very difficult time and to be even further away from home would be really hard for us.”
Amy was ten weeks old when Alison and husband David realised something was wrong. Their doctor referred her to the Children’s Hospital and then to Leeds, where Amy was admitted until a donor could be found.
There she underwent an artery transplant – a procedure that had to be repeated at the age of seven when she outgrew the replacement. And although she is well at the moment, further surgery will be needed in due course.
“It’s massive when they’re a baby. But as they get older and understand more, it gets harder because obviously there’s a risk to life, and Amy knows that now,” said Alison.
“She’s familiar with the Leeds unit and comfortable with the staff, which is really important at her age. She’s really worried about what will happen if it closes.”
The prospect is putting a strain on the family too. If Amy was admitted to hospital again it would mean splitting them up and leaving Leon, 12, Eva, five, and Tom, two, without their mum for weeks at a time.
A move to Newcastle would rule out support from family and friends.
“As a parent you need that support. And it’s really good to build up a relationship with the staff too, so you can ask them anything – or just go and have a cry on their shoulder.”
Alison has undertaken a sky dive to raise money for the campaign and Amy is doing her bit too, saving up her pocket money and planning a bun stall to support the cause.
Either way, the outcome will be known next month. The judicial review is due to go before the High Court in London on February 11.