Worcester 10 year-old campaigns for organ donation

Like most children, Arabella from Worcester, cannot wait for Christmas. But there is something she wants even more than a visit from Santa: to raise awareness of organ and tissue donation and the children in need of life-changing gifts, as she herself will need a cornea transplant to continue to see properly.

More than 230 other children in the UK urgently need organ transplants and more need or will need cornea transplants, if they are to be here for and literally see more Christmases. Arabella will need a cornea transplant in future, the clear tissue at the front of your eye, and will be relying on a tissue donor to help her.

Now, in a bid to raise vital awareness of the need for more child organ and tissue donors, a powerful campaign has been launched with children in need of transplants represented by handmade dolls that will be placed across the country. Each doll will wear a badge inviting people passing by to scan a QR code and hear stories of children in need of transplants from across the UK.

Arabella’s doll is being hosted by the UK’s largest tissue bank and purpose-built tissue donation centre, at NHS Blood and Transplant’s centre in Speke, Liverpool. It is hoped that the dolls and the real-life children’s stories will inspire more parents and families to consider organ and tissue donation and add themselves and their children onto the NHS Organ Donor Register.

Arabella, 10, will one day need a cornea transplant to help maintain her sight. Her mum Claire has also had a cornea transplant as a result of the same genetic condition.

Claire says : “Arabella is ambitious, enthusiastic and full of fun every single day, from the moment she wakes up to the time she falls asleep to dream about football.

“As of last year we discovered that Arabella has inherited a cornea dystrophy called ‘Avellino Dystrophy’ from me after a routine eye examination. As positive as we are as a family, this pulled at my heart knowing that one day in the future my little girl will need a cornea graft, due to the dystrophy being progressive over time.

“No parent wants their child to experience the emotions and frustrations that they have endured themselves. After having received a cornea transplant myself I understand how unsettling the wait can be.

“The delay in receiving a cornea transplant would delay my child’s independence as the condition causes clouding of the cornea which impairs vision. Due to her love of football I’m sure a delay when being called up to play for England one day would be most inconvenient to Arabella!

“Or not being able to take her driving test when her friends are or feeling isolated when you are unable to see the world as clearly as those around her.

“When I asked Arabella why she would like to take part and help in raising awareness, her answer was “Well, people need to know about it because if they need a cornea, or organ, and their children need one then they need to be able to get one. It’s really important that people know about it.” Cornea donors are in a short supply and we need to improve this for our children’s generation.”

Currently, there is a significant lack of child organ donors and cornea donors overall, resulting in children and their families waiting for a life-saving organ donation that tragically sometimes doesn’t come and patients of all ages who need a cornea transplant having to wait to have their eyesight saved or improved.

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.

There is no national waiting list for cornea transplants but it is believed more than 6,000 people, including children, are waiting for a cornea transplant. In 2022/23 more than 2,350 people donated their corneas after their death, including 17 children. And more than 3,500 patients had their sight improved by a cornea transplant, including 37 children.

The new campaign, Waiting to Live, aims to encourage parents and families to consider organ and tissue donation and, it is hoped, register themselves and their children as donors.

NHS Blood and Transplant’s Tissue and Eye Services, which runs tissue donation in the UK from the centre in Speke, Liverpool, is supporting the Waiting to Live campaign and hosting Arabella’s doll to raise awareness.

Kyle Bennett, Assistant Director, Tissue and Eye Services at NHS Blood and Transplant said: “For the patients waiting for a cornea transplant, a cornea donor means the gift of sight. This can only happen if a family says yes to tissue donation at time of sadness and grief. Yet families tell us that agreeing to tissue donation can be a source of great comfort and pride.

“When organ and/or tissue donation becomes a possibility, it is often in very sudden or unexpected circumstances. When families have already had the opportunity to consider organ and tissue donation previously or know already it is something they support, it makes a difficult situation that bit easier.

“By encouraging more people to confirm their support for organ and tissue donation on the NHS Organ Donor Register, we hope to be able to help more children and adults, to live and to see, both today and in the future.”

Waiting to Live builds on the Consider This campaign which earlier this year used radio and newspaper adverts to make a powerful appeal on behalf of the parents of 3-year-old Ralph who needs a multi-organ transplant.

Other children who feature campaign alongside Ralph and Arabella, include 7-year-old Daithi who has been waiting for a heart transplant for 2000 days, Sophie (aged 10) who is waiting for lungs, as well as Uqbah (14) and Pablo (13) who both need kidneys and could also be saved by the generosity of a living adult donor.

The campaign is supported by NHS Blood and Transplant and has been spearheaded by WPP agencies Wunderman Thompson, with the help of the global communications agency BCW.

To learn more about the children waiting for transplants/in need of cornea donors, to 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.