Brave little Melton girl is a ‘one in a million’

Adele Pedley and daughter Leia, who is recovering from a rare heart defect, at their Melton home EMN-170329-092620001

Adele Pedley and daughter Leia, who is recovering from a rare heart defect, at their Melton home EMN-170329-092620001

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The Melton mother of a baby girl with a rare ‘one-in-a-million’ life-threatening heart condition hopes to raise hundreds of pounds for the hospital which cared for her.

Adele Pedley and husband David feared they would lose little Leia when she was born with a heart which was twice the size it should have been and which was not contracting properly.

But 11 months on, Leia is fully recovered thanks to staff at the children’s heart unit at Glenfield Hospital in Leicester.

Adele (35) and her 15-year-old son, George, are planning to run the 10km Super Hero Run in London in May to raise money for the unit, which has been the subject of a campaign to keep it open after NHS England earmarked it for closure.

Adele said: “We nearly lost Leia and it was very scary for us when she was diagnosed with this very rare condition.

“The doctors found that she had had a heart attack at birth - it was awful.

“The medical care Leia had was fantastic.

“When she was in the unit at Glenfield it cost £5,000 a day.

“We are very grateful for the treatments she had so me and my son decided to do this run. I’ve never run anything like this distance before so it will be tough.”

Leia was born at the Queen’s Medical Centre at Nottingham.

Everything appeared normal at first but within two days Adele noticed her breathing wasn’t quite right, she was sleeping for long periods and her skin was discoloured.

Tests revealed she had neo-natal cardiomyopathy biventricular myocardial dysfunction with a severely dilated right heart chamber.

Doctors described it as a ‘one in a million’ condition and it was so rare they sent notes from the treatment, with the consent of the Pedleys, to hospitals across the world.

Leia was detained at the Glenfield heart unit for several weeks and has had regular check-ups since then.

Adele, who works at Woodlands Nursery added: “Leia is coming up for her first birthday next month and she is a lovely, smiley happy child.

“We are very concerned about these plans to close the Glenfield unit because the nearest children’s heart unit would be Birmingham.

“It won’t be so much a problem for Leia because she is perfectly well now but I really feel for those families who are at the beginning of their journey with a child who has a heart condition.

“I really hope they keep it open for all the other parents who will need it.”

Adele and George have already received pledges of £125 – go to www.justgiving.com/fundraising/leiapedley to sponsor them.