'We never gave up hope of an organ transplant'

Thalia-Beau Wright, five, was on the organ transplant waiting list when she died

The family of a five-year-old girl who died while waiting for an organ transplant have urged people to become donors to give others "the hope they're desperate for".

Christine Johnson, grandmother of Thalia-Beau Wright, said the family, from Scarborough, had tried to remain positive that she would find a heart and lung donor in time to save her life.

The appeal follows an NHS report that showed, in the North East and Yorkshire, 600 patients had died or been removed from the waiting list before having a transplant in the past decade.

A further 900 are still waiting for an organ after the transplant waiting list reached 8,000 earlier this year, the highest ever recorded.

Ms Johnson, 49, described her granddaughter as a "beautiful little soul - sassy, funny and feisty" who loved the beach and "all things girly".

"We always had hope, we never once thought Thalia wouldn't get her transplant," she said.

"I refused to believe it; I couldn't imagine a world without her in it. I had to believe she would get her call, and I did with all my heart."

At four, Thalia was diagnosed with restrictive cardiomyopathy, a rare heart condition that causes the heart to stiffen so it cannot fill up properly with blood.

This also put pressure on her lungs and in June 2020 she was listed for an urgent heart and lung transplant, the only treatment option available.

However, her health declined while she waited for organs to become available.

At four, Thalia was diagnosed with a serious heart condition and placed on the transplant waiting list

The family spent every day hoping that the call would finally come to save her life, Ms Johnson said.

"She struggled more and more and there was little that could be done to keep her stable whilst waiting.

"We were so positive and spent Thalia's wait in hospital planning what we would do when she was better.

"We filled the good days with as much fun as possible and making memories and we had hope, so much hope.

"Now we're trying to fulfil some of those dreams but sadly without Thalia."

In memory of her granddaughter, Ms Johnson set up the Thalia-Beau Foundation which supports seriously ill children and their families.

People should talk to their family about joining the NHS Organ Donor Register, Ms Johnson said.

"There are so many beautiful little lives like Thalia's, lives of all ages, that can be saved. You can give somebody the hope that they are just desperate for.

"If nothing more can be done for you, you can give the gift of life to somebody else – it keeps you alive and leaves the most positive legacy."

'People are dying needlessly every day'

Findings from a report by NHS Blood and Transplant (NHSBT) revealed a drop of 2% in life-saving transplants due to 100 fewer deceased people donating organs.

Anthony Clarkson, NHSBT director of organ donation and transplantation, said it was "really concerning" to see transplant waiting list numbers rising.

"Someone will die today waiting for an organ transplant," he said.

"People are dying needlessly every day because of the shortage of organs for transplant.

"You are more likely to need a transplant than you ever are to be a donor - and most of us would accept an organ if we needed one – but far fewer of us have made the decision to donate."

By signing up to the NHS Organ Donor Register, people could save or transform up to nine lives, he said.

Despite challenges, the report showed that progress had still been made.

More than 44,000 lives have been saved or improved through deceased and living donor organ transplants in the past decade, according to the research.

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