South Wirral family to raise awareness of rare condition in memory of Georgie Weaver

Georgie Weaver and her big sister Jessica.

The Weaver family.

First published in News
Last updated
Wirral Globe: Photograph of the Author by , Senior Reporter

A GRIEVING mother who lost her daughter to a rare birth defect when she was just five days old hopes to turn her heartache into positivity when she holds a fundraiser in her memory this month.

Emma Weaver and her husband Leigh, from Neston, hope to raise as much money as possible for Alder Hey Children’s Hospital following the death of their daughter Georgina Louise on May 31.

The tiny tot -  who arrived six weeks early at Arrowe Park Hospital on May 26 – was born with Tracheal agenesis, a rare condition in which the windpipe fails to develop.

Her parents watched on as doctors worked hard to stabilise her before transferring her to Alder Hey Children’s Hospital, where she was just the third baby in 18 years with the fatal condition.

“As soon as we arrived Georgie was taken to theatre,” said 32-year-old Emma, who is also mum to six-year-old Jessica.

“What seemed like an eternity later we were told by the head consultant of ICU that Georgie did not appear to have a windpipe.”

After further tests confirmed the worst, Emma and Leigh were given the heartbreaking news that their daughter would die.

“This was not the news we were expecting – we were numb,” said Emma.

“Georgie looked so perfect, you could not believe there was something wrong with her.

“It was a miracle she had breathed at all.”

Consultants from Great Ormond Street were contacted but could not offer any help and while specialists in Stockholm offered to try a series of operations, Emma and Leigh had to come to terms with the fact that there was no miracle cure for Georgie’s condition.

After having their daughter Christened in front of more than 30 family and friends, Georgie’s parents, big sister and cousins spent the day making memories, doing hand and footprints together.

Emma said: “We knew the time was coming when we needed to let go and on Saturday, May 31, I held Georgie in my arms as the life support was withdrawn.

“She breathed for 10 minutes by herself – our little fighter.”

Now, Emma and Leigh hope to raise awareness of Tracheal agenesis as well as much-needed funds for Alder Hey and Ronald McDonald House.

As well as taking part in the Liverpool to Chester bike ride, the family have also organised a family fun day at The Lady Hamilton in Little Neston this weekend.

They also hope to get Georgie trending on Twitter using #ThePowerofGeorgie to spread the word.

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