11-year-old Sophie from Poole is hoping for a double lung transplant this Christmas

More than half of a group of children who were transformed into handmade dolls, to raise awareness of the need for young organ donors, have received their life-saving organ transplants in time for Christmas.

The Waiting to Live campaign saw hundreds of dolls placed across the UK. They aimed to highlight the hundreds of under 18s on the waiting list for a transplant, including sixteen dolls linked to specific children sharing their stories.

Nine of the children who had a doll made to represent them have now received their transplant, while seven youngsters remaining on the waiting list another year on. Along with hundreds of other children they face the agonising wait for a transplant this Christmas and into the New Year.

Parents are being urged to think and talk about organ donation for themselves and their children, to help save more lives.

Sophie from Poole has been waiting for a lung transplant since spring 2023.

The 11-year-old, who will also need heart surgery, was diagnosed with health problems in the womb.

Sophie lives with her family in Poole and mum, Laura Gilbert, aged 37, says: “ The longer the wait, the harder the mental challenge, along with physical decline. I think you naively think it will happen sooner, but as the months go on it becomes harder to think you’ll get that call. We try to talk about it every day to keep it in our minds so we’re mentally prepared.

“Naturally, our biggest fear is we don’t get the call in time, or Sophie deteriorates further and transplant isn’t a viable option. As we are also needing major heart surgery as well as a double lung transplant, we have to hope her heart function stays stable to have this option.

“A transplant would hopefully allow her to have the experiences she’s not been able to have, to have a more independent life. Sophie leads an isolated life in terms of her physical ability and misses out on a lot of activities her friends and other peers can do, like simply being able to walk to school, or even carry her school bag round the school between lessons to hanging out with friends or even doing a hobby.

“We will be staying local at Christmas, spending it with our loved ones and enjoying the moments we still get to share. We will always have the thought that the phone could ring but it would be the best present for Sophie and her future.

“For adults and children waiting on the transplant list, this is often their only opportunity, and last treatment to have, for a potential future, another milestone to celebrate, to have another Christmas or another birthday. To make these decisions at the darkest moments of their loved ones passing, must be incredibly tough and hard to even put into words, and no thank you could ever be enough in terms of what that means to the recipient and their families.

“You have literally the chance to change and save lives by joining the organ donation register, and the impact and magnitude of that gift will forever stay with the people who need that.”

And these children are just a snapshot of those waiting as 280 children are on the waiting list for an organ transplant in the UK right now** and face Christmas waiting for the ultimate gift. One of those who has been added is toddler Zachary who has been waiting for a liver and small bowel transplant since the summer and is deteriorating, with his family fearing he may not make Christmas.

“Organ donation isn’t something I’d ever really thought about, and I wouldn’t have thought about children donating or needing transplants. It isn’t just Zachary, there are hundreds of children waiting. It’s hard, so difficult, but there can be life from death.

“As parents you never expect to be in this position and we are helpless. We want to do anything we can to raise awareness of Zachary’s story and all the children waiting. We hope someone else can save him because we’re not able to.”

There were 39 child organ donors in 2023/24. In the same period 252 children received a transplant, 151 from a deceased donor and 101 due to a living donor. In 2023/24 eight children sadly died on the waiting list for an organ transplant. More young donors are needed to help the children waiting for a life-saving transplant.

Anthony Clarkson, Director of Organ and Tissue Donation and Transplantation at NHS Blood and Transplant, said: “For many children on the transplant waiting list, their only hope is the parents of another child saying 'yes' to organ donation at a time of immense sadness and personal grief.

“Losing a child is tragic and such a difficult time, which is why we’re asking parents to think about what they might do around organ donation now. Families tell us that knowing their child has helped other people and another family is not facing the loss of a child too can be comforting.

“We urge parents to think and talk about organ donation for themselves and their children today. Your decision could help save lives.”

Waiting to Live, by creative agency VML (formerly Wunderman Thompson) with support from NHS Blood and Transplant, launched in November 2023 to highlight the hundreds of children waiting for a transplant and the need for parents to consider organ donation.

More than 7,900 people in the UK, including 280 children, face this Christmas waiting for an organ transplant.

If organ donation is possible, parents will be asked to make a decision as part of their child’s end of life care.

To support donation on the NHS Organ Donor Register, visit www.organdonation.nhs.uk