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

Two-year-old Ralf has been waiting for a liver transplant for about a year. 

He has BSEP deficiency and one of the main impacts is chronic itching, making him really uncomfortable both day and night, effecting things like Ralf’s mood, appetite, playing and sleep.

Waiting to Live
Mum Daisy and Ralf (Photo supplied)

Ralf lives in Haslemere with his mum Daisy and dad Doug. 

Daisy said: “At six months old we noticed Ralf had yellow eyes and a yellow tinge to his skin too. After lots of tests we have found out his liver will never function properly. We never imagined being in this position where our chubby, happy baby would get progressively more unhappy. We felt so helpless. A new liver is something we wish for every day.”

Ralf is not alone in waiting for a donor this Christmas. More than 230 other children in the UK urgently need this ultimate gift of life.

A new campaign called Waiting to Live has been launched in a vital bid to raise awareness for the need for more child organ donors. As part of the campaign Ralf and other children who are waiting for donors have been transformed into handmade dolls which will be placed across the country. Each doll will wear a QR badge for people passing by to scan and hear their stories.

Ralf's doll handmade by Valeri Gould as part of Waiting to Live campaign
Ralf's doll handmade by Valeri Gould as part of Waiting to Live campaign (Photo supplied)

Ralf’s doll is being hosted by the Children’s Liver Disease Foundation in Birmingham. It’s hoped 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 to the register.

“Ralf was healthy for the first six months then symptoms of his condition started, he was suddenly jaundiced,” said his mum Daisy. “It took a while to get him diagnosed and we trialled a drug which has been very successful but sadly it didn’t work so Ralf had to be listed for a transplant. Waiting is very difficult to be honest, lots of ups and downs. You try to forget about it and get on with your life but it is always there and impacts everything, we can’t make plans, we have to try and keep Ralf well. You try not to get your hopes up that a transplant is coming but you do, it never goes away.

Ralf Waiting to Live
Ralf and dad Doug (Photo supplied)

“You don’t think about organ donation unless something happens to you or someone close to you but even if people can have a quick chat about it, what you’d do if something happened where your child was in a position to donate their organs. If your child needed an organ, you’d want there to be one for them. You could help Ralf or one of the other children waiting.”

To learn more and add yourself and your child/children to the organ donor register, use your phone to search for the Waiting to Live campaign.

There is a significant lack of child organ donors meaning families are often waiting for a life-saving donation that sometimes tragically doesn’t come.

Just 52 per cent of families who were approached about organ donation gave consent for their child’s organs to be donated in 2021/22. This represents just 40 organ donors under 18. But where a child was already registered on the NHS Organ Donor Register, no family refused donation. The campaign, Waiting to Live, hopes parents and families will consider organ donation and register themselves and their children as donors.

Ralf playing
Ralf does not want to wait to live anymore (Photo supplied)

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.”