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CLDF BLOGS

How Joe’s story is still helping other children

Like any parents, when Saskie and Des were told that their five year old son, Joe, would need a liver transplant, they wanted to prepare him as best as they could.

“We wanted to explain why a new liver would help him, and what was going to happen,” says Saskie. “This was important to me as a mum, and also in my work as a doctor – I think it’s really important that people understand what treatments are available to them, and what they involve.

“We had been in touch with Children’s Liver Disease Foundation, since Joe’s initial diagnosis when he was six months old. They had been very supportive, with information about Joe’s liver condition and liver transplantation, and they were always there if we wanted someone to talk to, which was a great support.

“However, although we found some lovely books about going into hospital, neither I nor any of the CLDF team could find anything specific about having a transplant.

“We were very lucky: Joe had his transplant within a week of going on the waiting list. Although we had done what we could to prepare him, I still felt that Joe didn’t really understand why the operation was happening, or what it entailed.

“Surgery was successful, although there were some complications afterwards which meant we were in hospital for a month. It was during that time that I wrote a children’s story on my phone, in the evenings after Joe had gone to sleep.

“I told the story I had wanted to be able to tell Joe before he had the operation. I left out a lot of the details, because I knew that some kids wouldn’t have any complications, and some would have different ones; I wanted to keep the story simple enough that even young children could understand.

“When CLDF’s families officer came to visit us in hospital, I mentioned that I was writing the book we hadn’t been able to find! They loved the idea and said they would try and make it happen.

“To make the book as helpful as possible for other families, CLDF arranged for it to be reviewed by nurses, play therapists, surgeons, doctors and psychologists at the liver transplant centres as well as other parents of children with liver disease. This process took many months, but was well worth it.

“They also found a brilliant illustrator, Julia Seal. The first time I saw her pencil sketches I was blown away: she manages to convey such a lot in such an apparently simple way. I think there’s a lot of love, kindness and fun in her pictures. We’ve never met, but I’m a big fan!

“Seeing the book in print was amazing. The illustrations really bring the story to life, and in a sense you don’t really need to read the words- the pictures tell the story.

CLDF brought Saskie’s ideas to life

“Joe hadn’t really shown an interest in the book beforehand – I think he wanted to forget about being in hospital, and anything to do with his liver, for a long while. But seeing the book in colour, he really enjoyed reading it, and said with a smile, “now I can remember what happened’.”

Joe’s Liver Transplant Story is now used by the CLDF Support team and the paediatric liver units at Leeds, Birmingham and Kings as part of the process of preparing children for transplant. And just months after publication, the book received the ultimate accolade when it was announced winner of the Information for Children category at the British Medical Association’s annual Patient Information Awards. Judges described it as “a unique resource – vitally important in explaining a life-changing massive operation to young children.”

Four years on, Joe’s health is good. He’s full of energy and thinks having a book about his transplant experience is “pretty awesome! Because I’m helping other children.”

Joe with his parents today

Saskie says: “I’m delighted the book is a help to children and families affected by transplantation. It’s such a pleasure to have been part of this.”

And there is one family she would particularly like to thank: “We will never know the person whose liver was donated to Joe but we are so grateful to their family. They have truly given Joe a new life. Thank you to donors everywhere who save the lives of others.”

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