Families back campaign to raise awareness of need for more child organ donors
It is hoped the campaign will encourage families to register their children as donors.
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Your support makes all the difference.The families of two children waiting for organ transplants have backed a campaign to raise awareness of the need for more child organ donors.
Ava Murray, from Peterhead, and Jack Sneddon, from Glasgow, live with serious conditions that affect organs and are waiting for transplants that could give them a new lease of life.
NHS Blood and Donation has launched the Waiting to Live campaign, with dolls made in the likenesses of Ava and Jack, among others.
The handmade dolls will be planted across the UK, wearing badges inviting passers-by to scan a QR code to hear stories of children waiting for transplants.
It is hoped the stories will inspire the public to register themselves and their children as organ donors.
More than 230 children are waiting for organ transplants throughout the UK, including 15 in Scotland.
Four-year-old Ava lives with surfactant protein-C deficiency, a rare lung disease that means she has spent her life in and out of hospital and relies on oxygen to breathe.
Her doll will be hosted at Royal Aberdeen Children’s hospital.
Ava lives with her family including twin brother Aiden and mother Tamara Chalmers.
Ms Chalmers said: “Ava wears oxygen 24/7 and can’t come off it as it is keeping her alive. She doesn’t live the ‘normal’ four-year-old life as she is restricted with her oxygen.
“Ava needs a double lung transplant to improve her quality of life, to be able to run around freely like a normal four-year-old and not have to worry about tubes getting pulled or caught, or not being long enough to do anything, or oxygen cylinders running out.
“Transplant isn’t a cure, it’s a way to help improve someone’s quality of life to the fullest. Ava gets breathless very quickly, and can’t keep up when running around with her brother and sister and cousin.
“We are so desperately hoping one day she gets the call and her quality of life can be so much better.”
Ms Chalmers spoke about the effect the wait has had on the family, adding: “Nobody wants their child to die but you can save a child like Ava and make her quality of life the best it can be.”
Seven-year-old Jack was diagnosed with hypoplastic left heart syndrome while still in the womb.
His condition means the left side of his heart is underdeveloped and is incapable of supporting systemic circulation.
His doll is at the Evelina London Children’s Hospital where he spent the first six months of his life.
Jack’s mother, Fiona Sneddon, said: “Jack was born at 34 weeks via emergency C-section as I had pre-eclampsia. He had been diagnosed at my 20-week scan with hypoplastic left heart syndrome.
“Jack was flown down to hospital in London when he was one day old and had his first open heart surgery when he was two days old.
“We were in London for the first six months of Jack’s life where he had a further two open heart surgeries.
“Jack had a really rough start in life with a serious bowel condition twice, three mini strokes and three cardiac arrests.
“He fed by tube until he was 19 months old. Jack did really well when we got home, and at two years, eight months he had Fontan surgery. This unfortunately failed and Jack was in heart failure.
“Jack was actively listed on the heart transplant list in August 2020. He was hospitalised earlier this year for six weeks due to a serious protein problem and now follows a very strict diet and is slowly being allowed more fat each month. Jack is such a happy, confident wee boy despite all this.
“It’s very stressful waiting on the call. Both my husband and I get very nervous if we receive a phone call from a private number.”
She said an organ donation would give her son “a fresh start” and pleaded with members of the public to have their children registered as organ donors.
NHS Blood and Transplant warned of a significant shortage in child organ donors.
From 2021 to 2022, 52% of families who were approached by the NHS agreed to have their child’s organs donated.
This represented 40 donors under the age of 18.
Other children in the campaign include three-year-old Ralph, who needs a multi-organ transplant, and seven-year-old Daithi, who has been waiting for a heart transplant for 2,000 days.
Sophie, 10, is waiting for a double lung transplant, and Uqbah, 14, and Pablo, 13, need kidney transplants.
For more information, search for the Waiting to Live campaign online and on YouTube.