YOUNG Emily Linaker has a race against time to find a new heart after battling through a ‘horrendous’ period when medics thought she had no chance of staying alive.

The Blackburn schoolgirl has been added to the waiting list for a heart transplant after being diagnosed with restrictive cardiomyopathy, which reduces the flow of blood around her body.

Emily, 13, who recently moved from St Bede’s High School to St Thomas’s Centre in Lambeth Street, Blackburn, and her family now face an agonising wait to be given the go-ahead.

They will have to rush to a specialist hospital in Newcastle within a four-hour window, so she can have the procedure.

Mum Sam, 47, said: “It’s just a waiting game now. Every time the phone rings we all jump up. It’s really nerve-wracking to always have to be ready to drop everything and go.”

The family, who live in Manor Close, Hoghton, have been told it could be months before Emily comes to the top of the queue, due to a lack of donors.

Sam, who works as a nurse educator and is married to drainage engineer Kevin, said: “We desperately want people to sign up to the donor register and that’s why we wanted to tell her story. I think a lot of people want to do it, but just haven’t got round to it yet.”

Experts said the lack of donors meant one in five children die while waiting for a heart transplant, though babies are more at risk than children Emily’s age.

Figures published by NHS Blood and Transplant show there were 142 heart transplants last year, while 211 people remain on the waiting list, including 15 children.

Emily’s health problems started at the beginning of last year when her ankles and legs started swelling up.

Sam added: “We went to see doctors four or five times and they kept saying it was nothing serious.

“But I went to a different doctor and said I’m not moving until you do something. As a mum I knew something wasn’t right.”

Subsequent tests revealed Emily’s heart was running at 175 beats-per-minute, instead of the normal 70, and medics suddenly became more concerned.

Sam added: “It was about a year until we got a final diagnosis, but her heart deteriorated quite rapidly and we found out there wasn’t a treatment and she’d need a tranplant, which came as a massive shock.

“It’s better now than it was - for about four months we were under the impression that we were going to lose her whatever happened and that was horrendous. But hopefully she will be able to have a life.”

Emily is remarkably well-informed about her condition, even to the extent of knowing there is a 10 per cent chance she will die during, or within a year, of the transplant.

She said: “I’m not scared about it - I’m more excited because I want to be better. The disease stops a lot of things being fun because I have to go home because I’m tired. I haven’t been able to do anything like ride my bike or play with my friends and it just makes me sad.”

Her mum added: “She gets so tired, even with things like walking up stairs, but she never complains and has coped amazingly well.

“I think she understands the risks but just wants to get back to some kind of normal life.”

Dr Richard Kirk, consultant paediatric cardiologist at the Freeman Hospital in Newcastle, said: “There are only two centres in the UK for child heart transplants, ourselves and Great Ormond Street, and we each do roughly 15 to 20 procedures per year. There aren’t many children who need them but we’d do more if there were more donors.

“From the time we take the donor heart out of someone that’s died then there’s four hours until we have to stitch it into the recipient, because once you take the heart out the donor there’s no blood or oxygen following through. It goes in an ice bucket but it will deteriorate if left for more than about four hours.”

He said patients who have had a heart transplant will live another 20 years, on average, although younger patients often live longer.

The Freeman Hospital performed the first paediatric heart transplant in the UK in 1987, and the recipient recently celebrated her 26th birthday.