![](\"https:\/\/www.europesays.com\/uk\/wp-content\/uploads\/2026\/04\/0_Kayleigh-and-Jaidon-Allcock.png\")
<\/p>\nJaidon Allcock was just six days old when he was diagnosed with a rare genetic disorder at the Royal Stoke<\/p>\n
17:06, 12 Feb 2026Updated 06:08, 05 Apr 2026<\/p>\n
<\/p>\n
Kayleigh Allcock with her son, Jaidon Allcock, who passed away aged just 5<\/p>\n
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.<\/p>\n
He had been diagnosed with ARPKD at the Royal Stoke University Hospital<\/a> 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.<\/p>\n Mum Kayleigh Allcock, of Crewe<\/a>, told StokeonTrentLive: \u201cAt 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\u2019t feed and he needed oxygen to help with his breathing. So a decision was made in November 2020 to remove his second kidney.<\/p>\n \u201cAfter 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.<\/p>\n \u201cBut 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\u2019t as effective for him anymore. A decision was made to place him on palliative care.\u201d<\/p>\n Jaidon Allcock was diagnosed with autosomal recessive polycystic kidney disease when he was 6 days old<\/p>\n 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.<\/p>\n The 26-year-old explained: \u201cIt seemed like light at the end of the tunnel. We travelled to Birmingham Children\u2019s Hospital for the transplant, but unfortunately the liver wasn\u2019t healthy enough. Three weeks later we got called for another transplant, but Jaidon had sepsis so it wasn\u2019t able to be done.<\/p>\n \u201cIt got to the point where the hospital had to do more in-depth investigations into what it would actually take for Jaidon\u2019s transplant to be done safely and successfully. They got specialist machines and specialist surgeons from different countries.<\/p>\n \u201cFinally, 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\u2019t stop him from bleeding out. They said they had one last resort to try. But after 21 hours they still couldn\u2019t stop it.<\/p>\n \u201cSo 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.\u201d<\/p>\n Jaidon Allcock was diagnosed with autosomal recessive polycystic kidney disease when he was 6 days old<\/p>\n Kayleigh said Jaidon\u2019s five-year medical journey was extremely difficult to endure.<\/p>\n \u201cEmotionally, it was so difficult to try to remain positive,\u201d she explained. \u201cEspecially 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\u2019t. They didn\u2019t need medicine every two hours or to sit on a machine to keep them alive.<\/p>\n \u201cYou 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\u2019d still be alive.\u201d<\/p>\n Now Kayleigh has kept Jaidon\u2019s legacy alive by founding a charity in his name – Jaidon\u2019s Journal. The trust, founded in July, focuses on helping other families struggling against kidney disease.<\/p>\n Jaidon Allcock was diagnosed with autosomal recessive polycystic kidney disease when he was 6 days old<\/p>\n Kayleigh added: \u201cAfter 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.<\/p>\n \u201cA big thing we do is share poeple\u2019s stories. I think it\u2019s 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\u2019t do things that normal children can do.<\/p>\n \u201cIt\u2019s not a nice disease and anything I can do to spread awareness is at least something. I\u2019ve 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\u2019s worth getting checked. Some people don\u2019t find out until they\u2019re 30. It kills 50,000 people in the UK a year.\u201d<\/p>\n Kayleigh is staging a bingo night in aid of Jaidon\u2019s Journal at Coppenhall Club, in Crewe, on March 7. You can follow the charity by visiting its Facebook page, here<\/a>.<\/p>\n![](\"https:\/\/www.europesays.com\/uk\/wp-content\/uploads\/2026\/04\/0_WhatsApp-Image-2026-01-30-at-182148jpeg.jpg\")
<\/p>\n![](\"https:\/\/www.europesays.com\/uk\/wp-content\/uploads\/2026\/04\/0_WhatsApp-Image-2026-01-30-at-182150jpeg.jpg\")
<\/p>\n![](\"https:\/\/www.europesays.com\/uk\/wp-content\/uploads\/2026\/04\/0_WhatsApp-Image-2026-01-30-at-182151jpeg.jpg\")
<\/p>\n