Five year old Jaidon from Crewe was diagnosed with the rare disease called Autosomal Recessive Polycystic Kidney Disease (ARKPD) when he was just four days old. 1 in 20,000 babies are born with this rare genetic condition where the kidneys and liver turn into cysts. This causes the kidneys and liver to fail. Most of these problems start in childhood.
At birth children with ARKPD can have underdeveloped lungs and very large kidney’s that squash the other organs. Jaidon was transferred to Liverpool Women’s Hospital from his local hospital in Crewe when he was ten hours old because he was struggling to breathe because his lungs were full of fluid and he had to have them drained. His blood pressure was also extremely high. Jaidon was given just weeks to live.
Thankfully, Jaidon pulled through and was transferred to Alder Hey Hospital at 3 weeks old to start lots of blood pressure medications. Jaidon had his first kidney removed by key hole surgery when he was just two months old as it was far too big for his tiny body. He was back and forth to Alder Hey and he had his second kidney removed in 2020.
His kidney was a huge 16cm in size when it should be 6cm and it was full of cysts. Jaidon had kidney failure and started haemodialysis where a machine filters wastes from his body just as the kidneys would normally do. Jaidon has developed liver failure and is now waiting for a kidney and liver transplant. His mum Kayleigh and Jaidon have to travel to Alder Hey six days a week from their home in Crewe for dialysis lasting 5-6 hours a day.
Mum Kayleigh said “It’s heart-breaking seeing Jaidon miss out on some of the things other children get to do, because most of his life is spent attached to a machine to keep him alive. He can’t get into a proper routine for anything and only attends nursery when he can. The care at Alder Hey has been amazing but the impact this condition has on Jaidon’s life and all of us as a family including his little sister, is overwhelming at times. I’m about to start training on home dialysis so hopefully he can have a bit of normality. It’s an invisible illness and it’s hard for other people to understand how much he goes through. The grant that the kidney community have received through Lifearc is much needed. We really hope there will be advances in treatments in the future to prevent other children going through what Jaidon has too.”
“Jaidon thankfully has an amazing support network around him including his mum Kayleigh and his little sister but kidney disease is devastating for patients and their families. Not many people hear about how hard it is for people living with kidney failure especially for brave children like Jaidon who spend long periods of their childhood attached to a machine.”
Dr Caroline Jones, Senior Consultant Paediatric Nephrologist, Alder Hey
Dr Louise Oni said “It is a privilege to be leading this exciting project on behalf of the entire kidney community. We hope to learn from every opportunity to transform the future for people living with rare kidney diseases. We are creating the Lifearc Centre for Rare Kidney Diseases with the support of our charity partners Kidney Research UK. This UK wide project aims to create a culture of constant learning that will start by prioritising children looked after in our 13 children’s kidney centres. This should bring rapid advances to patients living with rare kidney diseases of all ages. It will be part of a bigger project led by Lifearc to collaborate and support mass transformation of the rare disease field to benefit many patients”