'I really need help' - Mum's appeal for kidney donor for teenage daughter

"She’s in kidney failure now and is having dialysis treatment,” Ummarah says. “There have been potential donors that have reached out but unfortunately they haven’t been a match for Uqbah so far.”

Uqbah is tube fed and has a number of other health conditions including galactosemia, right eye congenital ptosis, allergies and global developmental delay. She has also been diagnosed with autism.

Alarm bells started ringing for Ummarah when her daughter started frequently vomiting. “I would always get a call to collect her from school because she had been vomiting again in large volumes. She was deteriorating. She was really pale in colour.”

The kidney disease diagnosis was a “big shock to the system” for Ummarah, who lost her eldest daughter, Uqbah’s sister, ten years ago to a brain tumour. Haniah was just four when she died after a “long and difficult battle”.

Uqbah began treatment to try to manage her kidney disease shortly after she was diagnosed, under the care of Leeds General Infirmary. But her kidney function has sadly deteriorated.

In January 2021, she became unwell after contracting Covid and spent a month in Bradford Royal Infirmary.

“During that time, it was contemplated whether or not to start dialysis,” Ummarah explains, “because when children with kidney disease get poorly, even with a flu or something, their levels could really decrease.”

Uqbah, who is described by her family as having an infectious smile, did slowly pick up without needing it, but around two weeks ago, she began haemodialysis, a procedure to remove waste products and excess fluid from the blood when the kidneys stop working properly.

“We weren’t sure how she would take to it because she’s quite sensitive and she pulls at her [feeding] tube...

“That first day of dialysis was like a nightmare...but she was much calmer by the second day... It’s very challenging and I’m not out of the woods with worries about her pulling at the [dialysis] line.”

Uqbah’s outlook all depends on how well she takes to the haemodialysis, Ummarah says.

There’s no cure for chronic kidney disease, but treatment can help relieve the symptoms and stop it getting worse. Dialysis or a kidney transplant may be necessary in advanced stages, the NHS says.

Unlike many other types of organ donation, it's possible to donate a kidney while alive because people only need one kidney to survive. Those who want to be considered as a kidney donor are carefully tested to ensure they are suitable and are fit for the operation needed to remove a kidney.

Yasin Shah, Uqbah’s cousin, says several family members have put themselves forward but have not been a match. Others have underlying health conditions.

“We hope someone will step forward and hope to boost the number of people going through the testing process to find someone who is willing and compatible,” Yasin says.

Ummarah says: “A transplant would change Uqbah’s life...I would really like people to please reach out to us and help us at what is a very difficult time, especially with Uqbah’s underlying health issues and challenging behaviour.

"For anyone who is struggling, not just myself and Uqbah, I urge people to reach out, to be kind and to support the extended community.

"This time is difficult for us but regardless if tomorrow someone needed my help, I’d definitely reach out to them and I hope other people will do the same and help us at a difficult time.

"You only ask for help when you really need it and now is the time I really need this support for Uqbah. She means the world to me.”

People can get in touch with the family by emailing [email protected]