Like most children, Evie from Middlesbrough, cannot wait for Christmas. But there is something she wants even more than a visit from Santa: a life-saving organ transplant. Evie 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.
Evie’s doll is being hosted by Newcastle’s Freeman Hospital, where she is currently an inpatient on a Berlin heart while she awaits her transplant. 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.
Evie, aged four, has been urgently waiting in hospital for a heart for over eight months. She has dilated cardiomyopathy.
Mum Chloe, from Middlesbrough, says: “Evie has had a tricky life full of hospital trips. We did manage to remain home for nearly three years which was amazing, however it was inevitable that this would be the situation we would find ourselves in.
“Evie deteriorated and was placed onto the Berlin heart suffering a cardiac arrest in the process. During the wait she has had a stent fitted and also fought off sepsis as well as numerous infections.
“If Evie is well then we can cope but when she isn’t, we are in a really awful place of worry. My anxiety is at an all time high worrying and waiting because of the complications that have happened so far. We know that we need that precious gift and the waiting is very unnerving.
“A transplant would mean being a family of four at home. Most people take that for granted but for my husband, my son and me that is all we want more than anything. It would mean a better quality of life and time to thrive, I want Evie to continue with her love of life and all things fun.
“Evie cannot live without the gift of life so we are huge advocates of organ donation and will forever talk about Evie’s journey.
“I think the main thing is to think about what you would do if your child was waiting for an organ to live, would you accept a donated heart? If so, would you donate an organ to save lives? It’s a conversation everyone should have in their families to save future lives and to give donors a beautiful legacy.”
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 Freeman Hospital is supporting the Waiting to Live campaign and has five of its children waiting for transplants involved. The hospital is hosting Evie’s doll to raise awareness and Ava, four from Aberdeen, who needs a double lung transplant and Jack and Dáithí, both seven, from Glasgow and Belfast, who both need hearts, also have dolls to represent them as part of the campaign. Their dolls are being hosted at sites across the UK. And the family of Freemen inpatient, Arsala, three, from Manchester, who is waiting for a heart, are also sharing their story to raise awareness, off the back of the Waiting to Live campaign.
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 in the campaign alongside Ralph and Evie, Ava, Dáithí and Jack, include 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.
The campaign is supported by NHS Blood and Transplant and has been spearheaded by WPP agencies 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.”
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, use your phone to search for the Waiting to Live campaign.
Watch the campaign film.
