Vaughn Pearce-Storm runs happily around his home like any other little boy – full of energy and smiles, writes Linda Harrison.

But the 21-month-old was born with a rare heart defect that could end his life before he is able to grow big enough to have the operation he needs.

The brave youngster has already had open heart surgery when he was only five days old at Leeds General Infirmary.

But Vaughn, from Hemingbrough, near Selby, now needs a heart valve transplant, even though he is still too small to get the right valve.

Vaughn’s mum, Rebecca, 36, said: “We need Vaughn to grow as much as possible, but we don’t know when he will be big enough to have the surgery. We go to Leeds every six weeks to see if he can have this major surgery but we never know. So we’re just living in limbo.

“The hardest part is knowing that he could go into heart failure at any time. If this happened, they’d have to operate, they’d have no choice – even if he hadn’t grown enough.”

Rebecca, a researcher at The University of Bradford, and her husband, Simeon, 47, who works for UK Mail, have launched a charity Christmas raffle to raise money for the three charities that have helped Vaughn and his sister Willow, three.

Tickets cost £1 and prizes include family tickets to Castle Howard and a horse-drawn carriage ride.

Rebecca said the family wanted to thank the charities that have been supportive and helpful – The Children’s Heart Surgery Fund in Leeds, The Sick Children’s Trust, also in Leeds, and Hemingbrough Pre-school.

Vaughn was born with an interrupted aortic arch and a hole in the heart. Luckily, Rebecca said these were picked up on her 20-week scan.

“I was induced a week early at Leeds and Vaughn was put on a special drug that made his body think his heart was still in the womb. This kept him alive. I was only able to hold him for two or three minutes before he was taken away. I didn’t get to hold him again until the second or third day. And he had the open heart surgery at five days old.

“It’s hard to explain the emotions you go through, there are no words for it. But it was very, very hard. I was in the maternity ward afterwards seeing lots of other women having babies, and I’d just had mine taken away and didn’t know if he was going to make it. He’s such a fantastic little boy. He just springs back to life every time. Of course, there are many risks involved, and every operation he goes through, his chances of surviving are worse.”

For more information on the raffle, visit or email The Press ran its Lifesavers campaign last year to raise awareness of organ donation and to urge people to join the register.

For more information on organ donation, or to sign up, phone 0300 1232323, visit or text SAVE to 84118.

‘Donors could change child’s life’

Vaughn’s condition means he needs a heart valve transplant, but while the best option would be a mechanical valve, he is too small. The alternative would be a human donor valve of Vaughn’s size or an animal valve.

One of the problems on relying on a human donor valve is the serious shortage of donor organs for children.

Rebecca said: “We have to rely on getting a donated valve his size or wait until he is older, but it all depends on his heart. Nobody likes to donate their children’s organs, which is understandable. But I would urge parents to think about how it could change a child’s life.”

Rebecca praised the doctors at Leeds, and said she was very concerned about proposals to move the children’s heart surgery services from the city.

“If the unit closed it would be terrible,” she said. “Vaughn would probably be separated from his surgeon, who knows him so well. And the journey is bad enough already at 50 minutes.

“We’d probably have to go to Newcastle, which would add extra travel time so I’d have to stay over and Willow would miss out on a normal life - children need the security of a routine. “She wouldn’t be able to visit with my husband so easily. It’s upsetting for her as it is - like any little girl, she doesn’t like seeing her brother in bandages.”