Emily's battle continues

HAVE a heart - and help save the lives of people like brave Emily Gentry.

HAVE a heart - and help save the lives of people like brave Emily Gentry.

The 13-year-old desperately needs a new heart and is today urging everyone to make sure they become organ donors.

When she was six she was struck down by heart disease dilated cardiomyopathy and her parents, Mark and Marie, were told she needed a heart transplant.

Thankfully one was found and seven years ago she had the life-saving operation.

Now that new heart is in trouble so sadly Emily has been put back on the heart transplant list.

Today Emily said: “It is really important that people sign up to be organ donors. The more people that sign up the more people that can be saved.”

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The family, of Mallard Way, Chantry, are still hopeful that an innovative technique used by doctors at London's Great Ormond Street Hospital may mean Emily will be able to keep her current heart for a bit longer.

The technique involves putting stents in the worst affected arteries in an attempt to keep them open and it is thought Emily is one of the first children ever in Britain to have had the operation.

Her 45-year-old dad said: “She had to go back on the active list for a second transplant in July.

“They discovered she had got severe heart disease and the first heart was failing.

“It is an inevitability because it happens with all transplant hearts eventually, but we hoped it would take longer.

“In Emily's case she's been incredibly unlucky. She's got more breathless and is slowing down.

“In February she started to deteriorate rapidly. Finally they decided to try this new technique but we don't know yet if it has worked.”

Now the family are all desperately waiting for the news that a new heart has been found.

Mrs Gentry, 43, added: “In the last year she has been in and out of hospital a lot but now they've said there's nothing more they can do.

“As time goes on you tend to forget about it, but we always have a bag packed in case we get the call to say they have a heart, as it is more likely to be at night. All we can do is hope.”

Have you been saved by an organ donor? Write to Your Letters, Evening Star, 30 Lower Brook Street, Ipswich IP4 1AN or e-mail eveningstarletters@eveningstar.co.uk.

Organ donation

EMILY'S family members are determined to raise the profile of organ donation.

Not only are Mark and Marie signed up to the life-saving scheme but Emily herself is a registered donor, as are some of her friends.

And the family are also keen to see a change in the law so that instead of opting in to becoming a donor people have to opt out of the system, as is the case in other countries.

Mrs Gentry said: “We want them to change the law. It is such a waste of organs because what happens with them otherwise?

“There are a lot more organs that could be used.

“Currently there are a lot of people who die on waiting lists and that shouldn't be happening if it doesn't have to.”

Mr Gentry added: “Raising of the profile of organ donor registration is of the utmost importance, not just for Emily's sake, but for all the other adults and children who are waiting for transplants.

“There are too many people who die while waiting on the list.”

You can make a permanent record of your wishes by joining the NHS Organ Donor Register.

This means you don't have to carry your donor card around at all times.

The NHS Organ Donor Register is a confidential, computerised database that records the wishes of more than 13 million people who have decided that, after their death, they want to help save other lives.

Anyone can join the NHS Organ Donor Register by ringing 0845 6060400 or visiting www.uktransplant.org.uk.

Organ donation

More than 9,000 people need an organ transplant in the UK.

More than one in five of all transplants are from living donors.

Advances in surgical skills and better drugs mean that a year after surgery, 94pc of kidneys donated by living donors, 88pc of kidneys from people who have died, 85pc of transplanted livers and 81pc of transplanted hearts, are still functioning well.

The average waiting time for an adult kidney transplant is 841 days. Children wait on average 164 days.

Royal Mail fundraising

JUST eight months ago Mark Gentry started a new job as a postman at Royal Mail's Commercial Road centre in Ipswich.

But despite being new as soon as he told his colleagues about his daughter's plight they were keen to help in any way they could.

So they set about raising hundreds of pounds to buy a piece of technology to brighten Emily's time in hospital.

Mr Gentry said: “I said I might need to leave work at any time if a new heart is found. They were fine with that and my fellow workers wanted to do something.

“They thought that when she goes to hospital she will need to be able to work on her schoolwork and will want to stay in contact with friends.

“So they came up with the idea of fundraising for a laptop.”

His colleagues held a table football competition with 32 people taking part, along with a fishing match involving the company's fishing enthusiasts.

In total the fundraising paid for the £530 laptop as well as raising an extra £150 for the British Heart Foundation.

Mr Gentry added: “As well as raising the money we wanted to raise the profile of organ donation. They put up posters and signs.

“I really want to say thank you to everyone who took part, it is so kind of them.”

Emily Gentry

WHEN she was just six years old Emily Gentry was diagnosed with a life-threatening condition.

She had suffered a virus which led to the heart disease dilated cardiomyopathy, and her parents were told that she had to have a heart transplant.

A new heart was found after just a few weeks, and she had the operation on July 16, 2001.

Unfortunately her body rejected the heart four times, and at points doctors were not sure if she would pull through.

Thankfully the new heart eventually started working properly and Emily was able to get back to enjoying life.

Her determination saw her praised as the Evening Star Kid in a Million in 2001.

And in 2003 she entered the transplant games taking part in a ball throwing competition, an obstacle race and a 50-metre run.

But her heart problems have always stayed with her, and now she is not able to take part in PE lessons at Chantry High School, and needs a wheelchair for long distances and she can become breathless.

However the only-child still relishes life and enjoys school, particularly science, music and English.

This year her condition has deteriorated and despite the best efforts of doctors her heart is in the condition of a 60-year-old smoker.

Now all Emily, who loves dolphins and dreams of becoming a marine biologist, can do is hope that good news will come soon and she will get the new heart she desperately needs.