Like most children, Sienna, from Oldham, cannot wait for Christmas. But there is something she wants even more than a visit from Santa: a life-saving organ transplant. Sienna and more than 230 other children in the UK urgently need this precious and ultimate gift of life if they are to see more Christmases.
Now, in a bid to raise vital awareness of the need for more child organ donors, a powerful campaign has been launched that will see the children transformed into 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 waiting for transplants from across the UK.
Sienna’s doll is being hosted by Royal Manchester Children’s Hospital and 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.
Sienna, aged 10, is waiting in hospital in Leeds for a second liver transplant after suddenly experiencing liver failure in 2017 and again now. She is a patient in Leeds but lives in Oldham, Manchester. Mum Danielle, says: “In May 2017 we picked Sienna up from school and noticed she was a little yellow.
“We decided to take her to our local A and E to be checked where they said she was jaundice and they were going to keep her in overnight for observation.
“Sienna’s health deteriorated but they couldn’t find a reason why so we were transferred to Leeds. When we were there we were informed that Sienna was suffering from liver failure and needed a transplant urgently, the doctor thought she only had around a week to live and she was placed on the urgent waiting list.
“After five agonising days of waiting we were informed that there was a liver available for her and we were lucky enough that the transplant went ahead and everything went amazingly!
“Now 6 years on and unfortunately she is going through chronic rejection and has been placed on the waiting list again for a second transplant. We have been in and out of hospital since October 2022 but now she is not well enough to come home to wait. We have been in hospital for over two months now and she has to stay in hospital until she has had her transplant .
“I could not tell you how much we appreciate the person who donated Sienna’s liver in 2017 and their family for giving us an amazing five years of good memories and reasonably good health with our little girl. I really thought of them as her guardian angel!
“Now we just have to wait and pray that she gets another offer in time so she can get back to being a 10 year old living her best life! Back at home with her brothers and sister where she belongs.
“Why wouldn’t you want to save a child’s life if you can? If everyone was on the donation list then the wait wouldn’t have to be so long and the children wouldn’t have to become so ill that they might not make it to transplant
“People who register to be a live donor or a donor when they pass are literally saving more than one person’s life and that’s something to be proud of.”
Another Manchester family is supporting the campaign by sharing the story of their child’s wait to raise awareness. Arsala, aged three, has dilated cardiomyopathy and needs a heart transplant to save her life. She has been on the transplant waiting list for nine months and is currently in the high-dependency unit in the Freeman hospital, Newcastle, 150 miles away from home in Higher Blackley, Manchester.
Arsala is being kept alive by a Ventricular Assist Device (VAD) which has been attached to her heart to keep her alive until a donor heart becomes available.
Her dad, Baber Shahzada, says “Arsala amazingly can speak and understand Urdu, Spanish and English but she is missing out on being a normal inquisitive three-year-old going to nursery and making friends at playgroup. Due to her VAD she is vulnerable to infections and viruses as well as clots
“Every day is a waiting game before we can all start our lives again when she gets that amazing gift from a very brave family.
“We are doing the best we can to take care of her while we wait but cannot express how difficult it is.
“Without people considering being a donor or donating their child’s organs, we will not get to leave this hospital and be reunited with family and friends.”
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 new 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.
Royal Manchester Children’s Hospital is supporting the Waiting to Live campaign and hosting Sienna’s doll to raise awareness.
Rachael Barber, Medical Director at Royal Manchester Children’s Hospital, said: “As one of the country’s busiest children’s hospitals, it is important that we encourage open conversations about organ donation.
“This is a powerful campaign to be a part of and hopefully Sienna’s bright and eye-catching doll will bring this topic to the forefront of people’s minds.”
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 Sienna, 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.
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.