Alex, 10, in need of kidney transplant, part of a new campaign 'Waiting to Live'

Like most children, Alex Chmieleski from Bridgend, Wales, cannot wait for Christmas. But there is something he wants even more than a visit from Santa: a life-saving organ transplant.

Alex and more than 230 other children in the UK urgently need this precious and ultimate gift of life if they are to see more Christmases. 

Now, in a bid to raise vital awareness of the need for more child organ donors, a powerful campaign has been launched that will see the children transformed into handmade dolls that will be placed across the country. Each doll will wear a badge inviting people passing by to scan a QR code and hear stories of children waiting for transplants from across the UK. 

Alex's doll is being hosted by Noah's Ark Children's Hospital for Wales, in Cardiff, and it is hoped that the dolls and the real-life children’s stories will inspire more parents and families to consider organ donation and add themselves and their children onto the NHS Organ Donor Register.

Alex, aged 10, has been waiting for a kidney transplant since March after being born with Jubert syndrome and missing chromosomes.

His dad Kamil says: “Alex was born with kidney failure, the same as his older brother Gabriel. Gabriel has had his kidney transplantation for two years. 

“We all know Alex will need a transplant one day, and this day came last year. Unfortunately, my wife was denied from live transplant because of stones on her kidneys and I already gave my kidney to Gabriel. 

“His dialysis is overnight at home for 10 hours so we're able to carry on as normal a life as possible to keep him happy. Alex is in his last stage. Transplant is his only chance as his results are getting worse and medication are increasing to keep him stable.

“The worst thing of waiting is, we never know what is going to happen tomorrow. Every day is a new stressful challenge.

“We can't go anywhere for more than a day without a dialysis machine, we can't visit a family, parents in Poland or anywhere in the world together, always separate.  Alex is missing a massive part of his childhood, activities.

“Transplantation is one of the biggest blessings that one person can do for another. It can save so many lives, but for some reason people are scared. The best thing is to see how my son, Gabriel, is growing after his kidney transplant - if I could I would do that again. Anytime for anyone!”

Currently, there is a significant lack of child organ donors resulting in children and their families waiting for a life-saving donation that tragically sometimes doesn’t come. 

In 2021/22, just 52% of families who were approached about organ donation gave consent for their child’s organs to be donated. This represented just 40 organ donors under the age of 18. However, in cases where a child was already registered on the NHS Organ Donor Register, no family refused donation.  

To address this imbalance, the new campaign, Waiting to Live, aims to encourage parents and families to consider organ donation and, it is hoped, register themselves and their children as donors. 

The campaign is supported by NHS Blood and Transplant and has been spearheaded by WPP agency Wunderman Thompson, with the help of the global communications agency BCW.  

Angie Scales, Lead Nurse for Paediatric Organ Donation at NHS Blood and Transplant, said: “For many children on the transplant waiting list, their only hope is the parent of another child saying 'yes' to organ donation at a time of immense sadness and personal grief. Yet, families tell us that agreeing to organ donation can also be a source of great comfort and pride.

“When organ donation becomes a possibility, it is often in very sudden or unexpected circumstances. When families have already had the opportunity to consider organ donation previously or know already it is something they support, it makes a difficult situation that bit easier.

“By encouraging more young people and their families to confirm their support for organ donation on the NHS Organ Donor Register, we hope to be able to save more lives of children, both today and in the future.”

Waiting to Live builds on the Consider This campaign which earlier this year used radio and newspaper adverts to make a powerful appeal on behalf of the parents of 3-year-old Ralph who needs a multi-organ transplant. 

Other children who feature campaign alongside Ralph and Alex, include 7-year-old Daithi who has been waiting for a heart transplant for 2000 days, Sophie (aged 10) who is waiting for lungs, as well as Uqbah (14) and Pablo (13) who both need kidneys and could also be saved by the generosity of a living adult donor.             

To learn more about the children waiting for transplants, hear children’s stories and add yourself and your child/children to the NHS Organ Donor Register, visit: Hundreds of dolls made to represent children waiting for transplant as part of a new campaign - NHS Organ Donation.