Our 4-year-old boy from Preston will enjoy his first proper Christmas after receiving a life-saving transplant

More than half of a group of children who were transformed into dolls to raise awareness of the need for young organ donors, have received their life-saving organ transplants in time for Christmas, including Freddie, aged four, from Preston, who has had a heart transplant.

Freddie has never had a proper Christmas before: his first Christmas was impacted by the Covid Pandemic, then for his second he was in hospital, where he lived for around a year whilst awaiting a much needed call for a heart transplant.

Finally Freddie received his call in Autumn 2023 but it meant last Christmas, he was in intensive care recovering from his transplant.

Freddie’s family are now using their son's story to help raise awareness of the other children from the campaign who were not so lucky in receiving their transplants in time for Christmas.

What campaign is this?

The Waiting to Live campaign was launched in November 2023 and saw hundreds of dolls placed across the UK.

They aimed to highlight the hundreds of under 18s on the waiting list for a transplant, like Freddie.

Nine of the children who had a doll made to represent them have now received their transplant: Ralph, who inspired the campaign, and Jude had a multi organ transplant, Ava received a lung transplant, Pablo a kidney, Sienna and Ralf liver transplants then Amelia, Evie and Freddie all had heart transplants.

What is Freddie’s story?

Freddie’s mum Harriet, aged 32 from Preston, said: “The wait for the call was the worst time of our lives. We never knew if the call would come in time and we were always made aware that there was a chance Freddie might not make it whilst he waited.

“Whilst it’s a call you so desperately wait for, it comes with an incredible amount of emotion as you know what it means for another family. The one thing we were the most scared of was the one thing another family was facing and it was really hard to come to terms with that. Every time the phone rang our hearts would stop - was this it?

“We couldn’t imagine a life without Freddie and that fear was very real for us. We lived in hospital for around a year before the call came to say they had a match for Freddie. He’d missed out on so much and fought the toughest battles. He is our inspiration and we know he’ll continue to do both us and our donor proud.”

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Reflecting on what’s been life now that Freddie has had the transplant, Harriet continued: “Since his transplant Freddie has become a completely different person. Although he’s kept his cheeky personality and positive outlook on life, for the first time, he has grown and put weight on. He’s the same size as other children his age and doing things we used to dream about doing with him.

“We now can’t get him to stop eating and he’s enjoying food for the first time. Freddie used to tire very easily. Everything was a real battle for him - even breathing. We actually can’t keep up with him anymore and spend our days chasing him round.

“As a family, we feel so grateful to have our boy back and be able to share our life with him. We live in every single moment and cherish all the little things we are able to do. Being able to cuddle him without being attached to any wires or machines was a special moment for us.

“He’s been able to start school and absolutely loves it. The day he started school was incredibly emotional for us. We remember being told there was nothing more they could do for Freddie and that the following 48 hours would be crucial. Your mind races with all the losses your child would lose and school was one of those for us. Watching him walk through the school gates in his uniform on his first day was such a highlight for us as a family

“We can’t wait to be able to (hopefully) spend our first proper Christmas at home. Last year we were in ICU down in London and the year before in our local hospital waiting for the call. Prior to this, it was the Covid Christmas period so we have never had a normal or proper Christmas with Freddie. Although the hospitals made Christmas Day as magical as possible for us all, it will be nice to share our day without the need for observations, machines beeping, hospital roast dinners and being far away from family.

“We are due to go to Freddie’s grandparents on Christmas Day this year, where Freddie will be able to cause havoc with all of his cousins and eat all the chocolate he can manage - which given his new found love of food, is a lot!”

Helen hopes that Freddie’s success story encourages more young organ donors to come forward to help others.

She said: ““There are simply not enough words to describe our donor. What an amazing and brave family. They will never know the true extent of just how grateful we are but at the same time how incredibly sorry we are for their loss.

“Freddie’s donor is just the most selfless person and we have promised to live a life for them too. Freddie’s life was saved because of their decision and we hope they can take a small amount of comfort. To be an organ donor, in our eyes, is the greatest thing you can be.

“Organ donation is the ultimate act of love and kindness. A hero lives forever through the lives they save. We, as a family have all signed up to the organ donation register. Your organs could be the only chance someone has to live. Let your final act of kindness be saving lives.”

And what about the other children from the campaign?

Unfortunately seven youngsters from the Waiting to Live campaign remain on the waiting list another year on.

These 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.

They are amongst the 280 children in the UK who 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.

In 2023/24 there were only 39 child organ donors whilst 252 children received a transplant- 151 from a deceased donor and 101 due to a living donor.

During that same period, 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.

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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.”

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

Waiting to Live was launched by creative agency VML with support from NHS Blood and Transplant.