Research millions for Alder Hey-led project could save heartache for families like Jaidon’s

Millions of pounds have been awarded to fund research which could help thousands of people living with rare kidney disease.

It will initially focus on children like those treated at Alder Hey, as well as other UK children’s kidney centres.

And while it won’t help her son Jaidon, who spends six out of every seven days receiving life-saving treatment at the Liverpool children’s hospital, young mum Kayleigh Allcock has welcomed the cash boost.

“Most of Jaidon’s life is spent attached to a machine to keep him alive and it’s heartbreaking to see him go through this and to miss out on things other children get to do,” says Kayleigh.

“The care at Alder Hey is, and has always been, amazing but the impact this has on him and the rest of us as a family can be overwhelming at times.

“The research funded by this money could find cures and new treatments to save other children and families going through what we have.”

“It could mean an entirely different lifestyle for other people like Jaidon, and that’s incredible news.”

The UK wide project has been given the £9.4 million boost to create a UK Kidney Ecosystem and develop new treatments, tests and cures for people living with rare kidney diseases. It will be led by Dr Louise Oni, a kidney consultant at Alder Hey Children’s Hospital and senior lecturer at the University of Liverpool, who will establish the LifeArc-Kidney Research UK Centre for Rare Kidney Disease to carry out the work.

The funding has come from medical charity LifeArc, and is supported by a further £1m from Kidney Research UK.

It’s much-needed research which Kayleigh, 24, is happy to raise awareness of.

Her precious little boy is currently waiting for a kidney and liver transplant amid the knowledge and fear he might not otherwise make it beyond the end of the year.

That research could mean that others with his condition can be treated before it gets to this desperate stage.

Five-year-old Jaidon was diagnosed with Autosomal Recessive Polycystic Kidney Disease (ARKPD) when he was only four days old. The rare genetic condition affects only one in 20,000 babies causing the kidneys and liver to turn into cysts, and then fail.

Jaidon was transferred to Liverpool Women’s Hospital from his local hospital in Crewe when he was just 10 hours old because he was struggling to breathe due to his lungs being full of fluid, and his blood pressure extremely high. 

He was given just weeks to live. “I was told children with this condition don’t normally make it beyond four weeks which was devastating,” says Kayleigh, who also has a daughter, Chanel, who’s three.

“To think about him being ripped away from me was awful. But thankfully, that wasn’t the case.”

Jaidon pulled through and he was transferred to Alder Hey Hospital. He had his first kidney removed by keyhole surgery at two months old as it was far too big for his tiny body, and he had his second kidney removed – it measured 16cm when it should be 6cm and was full of cysts – in 2020. 

A haemodialysis machine now does the job of his kidneys to filter waste from his body and Kayleigh and Jaidon have to travel to Alder Hey six days a week for dialysis lasting five to six hours a day.

He has also developed liver failure and is now waiting for the joint kidney and liver transplant.

“The grant that the kidney community has received is so much needed,” says Kayleigh. “And I really hope there will be huge advances to prevent other children going through what Jaidon has. 

“My other wish is that Jaidon will get the transplant he needs to survive – and I will never give up on that hope … he has beaten the odds so many times already.

“In spite of everything, Jaidon is such a happy little boy. He loves animals and he is always smiling.

“He is maybe a little spoilt but that’s because if he only has a short time I want to fill it with memories and make it as good as I possibly can.”

“Of course it’s devastating that the new research has come too late for Jaidon, but I cling to the transplant hope that he has, that we have, and pray that cures and treatments are found that will save another little boy, or girl, like him from going through what he has.”

Dr Caroline Jones, Senior Consultant Paediatric Nephrologist, Alder Hey, says:

“Jaidon thankfully has an amazing support network around him 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 Oni adds:

“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.”

Find more information on the Alder Hey website.

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