This time last year, we were helping to promote Waiting to Live, an award-winning national organ donation campaign which saw children transformed into handmade dolls to raise awareness of the need for young organ donors.
We’re delighted to report that over half the children featured in the campaign have now received a transplant in time for Christmas, including three year old Ralf, whose story we featured on our website last year and who received his new liver this summer. Ralf’s mum Daisy shares their story here.
“Ralf was born with a genetic condition which led to him needing a liver transplant, which he received in summer 2024. The wait was the hardest thing we have ever done. You live every day, every moment, not knowing if the call is coming or when, and mentally this took a huge toll on us, especially as we had many calls up to hospital with a donor offer which for many reasons couldn’t go ahead, before finally it happened.
“There are also a lot of practicalities to contend with; you can’t be more than an hour from home, and you always have to have your phone with you, on loud, and with signal, 24 hours a day, for around two years of waiting.
“One of the hardest aspects though is that you risk being temporarily suspended from the list if you contract any kind of bug or cold that would make surgery unsafe, so not only are you dealing with the wait, you are having to shield from family and friends a lot of the time. Christmases were especially hard for that reason; having one day of fun and normality would have been incredible, but the reality is it means meeting up with lots of different households all of whom might be suffering from a variety of winter bugs and it just wasn’t worth the risk.
“Fear was a big part of our everyday lives; whilst we waited and could do nothing, we had to watch our child get sicker and sicker and more and more unhappy; moving further away from others his own age, both developmentally and physically.
“The difference now Ralf has had his transplant could not be more dramatic. I once heard a doctor describe liver disease as “like being alive but not living”. Ralf is now living, and living fully; he has a ‘spark’ for the first time, and we can finally see the boy he was always meant to be.
“He has interests, makes up imaginary games, doesn’t stop talking, is curious about the world around him, and is such a kind, empathetic person. Because of his disease, he was never able to get a full night’s sleep, and now he conks out for a full twelve hours, waking up happy and refreshed.
“Before the transplant, we would daydream about what Ralf might be like and how our lives would look afterwards, and mostly, this would be about ‘big’ things. Holidays we would go on, parties we might throw, big days out and trips to the seaside or a theme park. But actually, our highlights are the little things. Me and my husband literally sometimes just sit and watch him eat; he never had an appetite before. I relish the days I have to clean his face because it’s covered with bits of dinner!
“We get excited that his socks get holes in because he runs around so much, that his wellies are covered in mud because now he goes and plays outside and jumps in puddles, that our living room is always a mess because he actually plays with all his toys, that we can’t throw cardboard boxes out because one is now a ‘volcano’ and we have to run from the ‘lava’. Those are the things that are most precious and I hope we never take for granted.
“Ralf will turn four in February 2025 and we have recently been looking at schools for him to start in September next year. Before the transplant, school seemed literally impossible, something he physically wouldn’t have been able to handle, but now, it feels like such a privilege that this is something on his horizon. Our dream is really for him just to be happy and healthy enough to be like any other four year old, starting school, making friends, and beginning his life as an independent boy. That really would be a dream come true.
“It’s very difficult to put into words what we think of Ralf’s donor, but we think of them every day. It’s very surreal to think that a part of someone else is forever within your child, but it also feels like an honour and a privilege to carry them with us.
“This Christmas we hope for Ralf to continue to be well enough that we can see friends and family and enjoy the festive season! See Father Christmas, sing carols, go to markets and enjoy opening his presents.
“Every laugh and happy moment Ralf has had since the summer is due to what his donor and their family have given, and Ralf and his donor will now be forever linked. It feels incredibly special.”
Those children from the Waiting to Live campaign still waiting are Diathi and Jack who need hearts, Alex, Charlie and Uqbah who require kidneys, Arabella who may need a cornea transplant in future to save her sight and Sophie who has been waiting for a lung transplant since spring 2023.In total 280 children are on the waiting list for an organ transplant in the UK right now**.
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, so 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
