Like many children in Bradford, Uqbah eagerly anticipates the Christmas holidays. However, her greatest wish extends beyond festive joy—it is the gift of a life-saving organ transplant. Uqbah is among over 230 children in the UK who desperately require this invaluable and life-changing gift to witness more New Years.

In an effort to raise crucial awareness about the pressing need for child organ donors, a compelling campaign has been initiated. As part of this initiative, children like Uqbah are being transformed into handmade dolls, which will be strategically placed across the country. Each doll will wear a badge prompting passersby to scan a QR code, allowing them to listen to the stories of children awaiting transplants throughout the UK.

Statistics from 2021/22 reveal that only 52% of families approached about organ donation granted consent for their child’s organs to be donated. This resulted in a mere 40 organ donors under the age of 18. Notably, when a child was already registered on the NHS Organ Donor Register, no family refused donation.

Uqbah’s doll is currently hosted at Leeds Children’s Hospital, with the hope that these dolls and the real-life stories they represent will motivate more parents and families to consider organ donation. Both child and adult deceased donors, as well as living kidney and liver donors, are urgently needed to assist children on the waiting list.

Uqbah, a 14-year-old awaiting a kidney transplant, has faced numerous health challenges, including a metabolic condition, congenital ptosis in her right eye, tube feeding, asthma, allergies, autism, and global developmental delay. Uqbah’s mother, Ummarah, shares the difficulties they endure, emphasizing the critical need for a kidney donation to provide Uqbah with a new lease on life.

Her mum Ummarah, from Bradford, says: “Uqbah didn’t walk until she was the age of five, and even now requires a wheelchair to cover long distances. She has very limited understanding of the world and has very little concept of her surroundings.”

“Uqbah was diagnosed with Chronic Kidney Failure stage 5. Gradually her kidney function deteriorated completely. Uqbah was listed for a kidney transplant in 2021 and since her condition has deteriorated. She is now on dialysis three times per week, recently increased to four hours per visit, as her health is deteriorating.

“We are going through a very rocky road, and challenging times, as life is literally between hospital and home. Currently, Uqbah cannot enjoy any of her favourite activities such as, swimming due to the risk of infection, neither can we enjoy holidays abroad like we used to with our other family members, due to Uqbah’s deteriorating health and her being on the donor transplant list.

“A kidney donation for Uqbah would be a new lease of life! It would mean the world and a new beginning for Uqbah, myself and our extended family. It would allow Uqbah to enjoy daily activities and live life to her fullest, as she loves life and is a very beautiful and sociable young lady!”

“Uqbah has always had to live an underprivileged life, due to her underlying health conditions. Therefore, as a mother in great need, I urge anyone to please help by coming forward and giving my beautiful daughter a chance to a new life, one that she is entitled to and deserves. As a mother, I wish to see my only surviving child at a young age of 14 years enjoy her life and experience joy, instead of anxiety, pain, and suffering.”

“I don’t want to lose another precious child, like I lost my eldest gorgeous daughter, Hania. Hania, sadly passed away from a rare brain tumour at the young age of 4yrs old.”

Ummarah, is particularly aware that while anyone might be a suitable donor match for Uqbah, people of similar South Asian heritage may have a higher chance of being a match. Appealing directly to members of the local Asian community, she says:

“As a mother, I would like to say to all communities, please, please, please do not shy away from being organ donors. It is an altruistic act and as quoted in the holy Quran, ‘To save one human life is equivalent to saving the whole of humanity’. Please donate, as through this selfless act, you can save many lives.”

“Thank you for taking the time to read Uqbah’s story. Please help by sharing the story and spreading the word, in the hope that some angel somewhere reads the story and comes forward, offering to be a donor, and saves my baby’s life.”

Sienna, from Oldham, who is staying at Leeds Children’s Hospital while she awaits a liver transplant, is also involved in the Waiting to Live campaign. Her doll is being hosted by a hospital near her hometown of OIdham, at Royal Manchester Children’s Hospital.

The 10 year old needs a second liver transplant after suddenly experiencing liver failure in 2017 and again now. 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 donor register 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.”

Currently, there is a significant lack of child organ donors resulting in some children and their families waiting for a life-saving donation that tragically sometimes doesn’t come. Although some children can be helped by adult deceased or living donors, like Uqbah and Sienna, others are relying on a child organ donor to save their life.

Dr Amanda Newnham, Paediatric Consultant Nephrologist, Leeds Children’s Hospital says; “We know there are hundreds of children waiting for an organ transplant, including 25 children from Yorkshire and the North East. Hearing Uqbah and Sienna’s stories really brings home the reality of how difficult it is for these children and their families.

“We are proud to support the Waiting to Live campaign and host Uqbah’s doll to raise awareness. We hope it encourages everyone to consider organ donation and for all members of the family. Organ donation save lives and is an amazing legacy.”

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 family 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, as well as encouraging others to potentially consider the incredible gift of living donation, 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 children to the NHS Organ Donor Register, visit: https://waitingtolive.org