Mum's mission to help families in memory of son's five-year battle against rare disorder

Charity is working to promote awareness

- Sentinel Reporter

A MUM whose five-year-old son died of a rare genetic disorder is reaching out to other families facing a similar ordeal.

Jaidon Allcock died from complications of autosomal recessive polycystic kidney disease (ARPKD) on October 1, 2024. He had been diagnosed with the life-limiting condition at just six days old.

It causes cysts on the liver and kidneys, resulting in high blood pressure, fatigue and eventual liver and kidney failure.

Now mum Kayleigh hopes Jaidon’s legacy will be to promote awareness of the disease, which affects one in 20,000 children, through the charity she has founded in his name.

Kayleigh, of Crewe, said Jaidon had his first kidney removed at two months old, was stable for about a year, but then ‘reached a point where his abdomen was getting quite big’

“He couldn't feed and he needed oxygen to help with his breathing,” she said. “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.”