Jaidon Allcock was just six days old when he was diagnosed with a rare genetic disorder at the Royal Stoke
17:06, 12 Feb 2026Updated 06:08, 05 Apr 2026
Kayleigh Allcock with her son, Jaidon Allcock, who passed away aged just 5
A brave young mum has opened up about her traumatic loss – after her five-year-old son died from a rare genetic disorder. Jaidon Allcock passed away from complications of autosomal recessive polycystic kidney disease (ARPKD) on October 1, 2024.
He had been diagnosed with ARPKD at the Royal Stoke University Hospital when he was just six days old. The life-limiting condition – which affects one in every 20,000 children – causes cysts on the liver and kidneys, resulting in high blood pressure, fatigue and eventual liver and kidney failure.
Mum Kayleigh Allcock, of Crewe, told StokeonTrentLive: “At two months old, he had his first kidney removed. He became stable for about a year. But then he reached a point where his abdomen was getting quite big, he couldn’t feed and he needed oxygen to help with his breathing. So a decision was made in November 2020 to remove his second kidney.
“After that, he obviously had to start having regular dialysis to keep him alive. One month later, he was diagnosed with fibrosis of the liver and left ventricle hypertension in his heart. But he stayed strong and carried on surviving through the dialysis for the next four years. He seemed like he was doing well. He was getting bigger, maintaining a normal healthy weight. And he was a happy boy.
“But then we got to November 2023, and he started having liver infections. There was a cycle of getting infections, having antibiotics, getting a bit better, and then starting over again. By April 2024, he was really struggling because the antibiotics weren’t as effective for him anymore. A decision was made to place him on palliative care.”
Jaidon Allcock was diagnosed with autosomal recessive polycystic kidney disease when he was 6 days old
Despite being placed on end-of-life treatment, hope arrived when Jaidon was accepted for a combined liver and kidney transplant in July 2024. But Kayleigh says his medical troubles only continued.
The 26-year-old explained: “It seemed like light at the end of the tunnel. We travelled to Birmingham Children’s Hospital for the transplant, but unfortunately the liver wasn’t healthy enough. Three weeks later we got called for another transplant, but Jaidon had sepsis so it wasn’t able to be done.
“It got to the point where the hospital had to do more in-depth investigations into what it would actually take for Jaidon’s transplant to be done safely and successfully. They got specialist machines and specialist surgeons from different countries.
“Finally, we had another shot at a transplant in August 23, 2024. He seemed healthy enough for the procedure this time. At 3.20am, he went to theatre. And it all spiralled from there. After 16 hours of him being in there, the doctors said to me that they couldn’t stop him from bleeding out. They said they had one last resort to try. But after 21 hours they still couldn’t stop it.
“So the decision was made to stop the surgery and stabilise him. Jaidon was placed on the intensive care unit and I was told to go and say my goodbyes. But he picked back up and seemed healthy again. So the transplant was done and successfully performed. But three weeks later, he got infections again. Now he was too fragile to fight them. They said there was nothing more they could do for him and he died a few months later.”
Jaidon Allcock was diagnosed with autosomal recessive polycystic kidney disease when he was 6 days old
Kayleigh said Jaidon’s five-year medical journey was extremely difficult to endure.
“Emotionally, it was so difficult to try to remain positive,” she explained. “Especially as he got older. He got to the point where he was asking questions about why he needed feeding tubes and treatments, when all the other kids didn’t. They didn’t need medicine every two hours or to sit on a machine to keep them alive.
“You just feel so helpless as a parent. Not being able to cure them or truthfully guarantee that anything will be okay. Of course, I told him he was going to be okay whether I believed it or not. But it was hard waking up each day and worrying whether he’d still be alive.”
Now Kayleigh has kept Jaidon’s legacy alive by founding a charity in his name – Jaidon’s Journal. The trust, founded in July, focuses on helping other families struggling against kidney disease.
Jaidon Allcock was diagnosed with autosomal recessive polycystic kidney disease when he was 6 days old
Kayleigh added: “After Jaidon died, I knew I needed to do something to promote awareness and help other affected families make memories with their children. So I established his charity foundation. Now I go to the hospitals and do play sessions for the children, alongside advocating for them and giving their families advice.
“A big thing we do is share poeple’s stories. I think it’s really important to share the reality of what this condition can do. Children with this disease can spend 10 hours a day hooked up to machines. Sometimes even longer. They can’t do things that normal children can do.
“It’s not a nice disease and anything I can do to spread awareness is at least something. I’ve met parents who had 16-year-old children with total kidney failure because their condition went undiagnosed. If you look at the symptoms – feeling tired, short breath, blood in the wee – and think any of them apply to you or someone you know, it’s worth getting checked. Some people don’t find out until they’re 30. It kills 50,000 people in the UK a year.”
Kayleigh is staging a bingo night in aid of Jaidon’s Journal at Coppenhall Club, in Crewe, on March 7. You can follow the charity by visiting its Facebook page, here.
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