Like most children, Jensen, 10, cannot wait for lots of things, like Easter and Spring. But there is something he wants even more: a life-saving organ transplant. He and more than 230 other children in the UK urgently need the precious and ultimate gift of life of a transplant to live.
In a bid to raise vital awareness of the need for more child organ donors, a powerful campaign – Waiting to Live – has seen children transformed into dolls placed across the country. Each doll wears a badge inviting people passing by to scan a QR code and find out more about children waiting for transplants from across the UK.
It is hoped that 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 onto the NHS Organ Donor Register.
General dolls (not linked to a specific child) are on display in the South West region to raise awareness, and local child Jensen and his family are sharing his story to highlight what it is like for children awaiting an organ transplant.
Jensen, who lives in Plymouth with his parents and two brothers, has been waiting for a kidney transplant for more than a year. The ten-year-old is on dialysis for ten hours every night and has to restrict his fluid intake and his diet. Jensen has regular blood tests and had peritonitis twice at the end of last year. He is developmentally delayed and wears hearing aids in both ears due to having no cochlear nerve.
Mum Danielle says: “Jensen can be quiet quite at first but does come out of his shell. He is a character and comes out with the funniest things. When he finds something he likes he gets obsessed with it, he loves to reread his booklet from the hospital about things you need to know when you have your transplant.
“He’s really good with everything he has to deal with, he’s got used to it as have we all. His brothers are very protective of him. Jensen likes Minecraft, Lego and loves Power Rangers. He has a great imagination for drawing and writing stories and likes to recreate his school lessons for us.
“Jensen has always been lacking in energy growing up and had a very limited appetite. He was diagnosed with end stage kidney failure in January 2022. He was later diagnosed with BOR syndrome which is what they believe caused the kidney failure.
“It is hard waiting for a transplant because there are certain things you can’t plan just in case you get the call so you can feel a bit restricted sometimes.
“If we have a day out anywhere Jensen sometimes takes a day to recover and regain his energy again. He is also limited on the things he can do such as playing sports. He cannot play any contact sports which means he misses out on doing lots of things he would like to do.
“A transplant could make a huge difference to not only Jensen but to all of us. For Jensen it would mean he could do more of the things he can’t currently do such as going to friend’s birthday parties or staying over at friends or family.
“It would also mean as a family we could go out for a day out without having to plan to get back in time so that Jensen can go on his dialysis and be finished in time for school in the morning. It also means we could go on a holiday as a family and not have to take all his equipment with us. A transplant would mean freedom.
“I would say if you can donate and it’s something you want to do then definitely look into it. You never know if someone in your own family may need a transplant and I’m sure those who receive it will be forever grateful.”
Currently, there is a significant lack of child organ donors resulting in children and their families waiting for a life-saving donation that tragically sometimes doesn’t come.
In 2021/22, just 52% of families who were approached about organ donation gave consent for their child’s organs to be donated. This represented just 40 organ donors under the age of 18. However, in cases where a child was already registered on the NHS Organ Donor Register, no family refused donation.
To address this imbalance, the campaign, Waiting to Live, aims to encourage parents and families to consider organ donation and, it is hoped, register themselves and their children as donors.
Three sites across the South West are hosting dolls, each representing a child on the waiting list, UHBW’s Bristol Royal Hospital for Children (Jensen’s hospital) and NHS Blood and Transplant’s Filton and Stoke Gifford centres in Bristol.
Joanna Woodland, Paediatric Renal Clinical Nurse Specialist, at UHBW where Jensen is a patient, said: “The uncertainty of not knowing when a suitable donor will be found is challenging and we are moved by families’ strength, optimism and resilience while waiting on the transplant list.
“It is inspiring to see the happiness in the patients we care for and their families when they are told an organ has been found for them and knowing the future possibilities, and opportunities this will provide for them.
“We are proud to support the Waiting to Live campaign and hope it will encourage parents and families to consider organ donation.”
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.
“When organ donation becomes a possibility, it is often in very sudden or unexpected circumstances. When families have already had the opportunity to consider organ donation previously or know already it is something they support, it makes a difficult situation that bit easier.
“By encouraging more young people and their families to confirm their support for organ donation on the NHS Organ Donor Register, we hope to be able to save more lives of children, both today and in the future.”
To learn more about the children waiting for transplants, hear children’s stories and add yourself and your child/children to the NHS Organ Donor Register, use your phone to search for the Waiting to Live campaign. And watch the campaign film https://www.youtube.com/watch?v=8sDVRiA5vw4
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