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Liverpool Echo
Liverpool Echo
National
Benjamin Roberts-Haslam

Dad makes huge sacrifice after son's rare diagnosis at birth

Parents were told that their son's kidney function would eventually drop to the point where he would need a transplant just weeks after he was born.

Luke Amos, from Ellesmere Port, was born with a rare genetic disorder called polycystic kidney disease and ten years later the dreaded moment arrived when the now 11-year-old was forced under the knife. The summer of last year saw Luke begin to prepare for dialysis while his dad Carl underwent a range of tests to prepare him to be a donor.

Due to starting dialysis, Luke was forced to miss three afternoons of school a week but managed to take it all in his stride as he adapted to taking the drug and gave up football. Following the transplant in May this year, after Luke's dad Carl found he was a suitable donor, the now 11-year-old's uncle Dr John Stone is now researching new ways to treat the condition that plagued his nephew.

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Luke said: “Last year was the hardest when I was told I would need to start dialysis. It mostly restricted what I could have to eat and drink and couldn’t have things that I loved. My transplant has really changed my life and allowed me to do all the things I missed when I was on dialysis, I can even go swimming now. I hope that my kidney stays healthy for a long time and that uncle John can make more kidneys available for people who need them.”

John, researching lung transplantation at the time of Luke’s diagnosis, has now come up with an innovative way of keeping donated kidneys alive outside of the body for longer after seeing the difficulties his nephew had with treatment.

John’s method pumps warm blood mixed with lots of beneficial additives through the organ which reduces damage compared with storing donor kidneys on ice. Keeping a kidney on a perfusion circuit for longer allows surgeons to address some of the operational challenges of running a transplant centre and allow patients more time to make the journey to hospital.

Dr John Stone, Senior Scientist at Pebble Biotechnology Laboratories said: “Seeing Luke on dialysis was a real eye-opening experience into the challenges that kidney disease patients face daily. We all know that Luke is likely to need another transplant in the future and working on research that could benefit him and others is humbling.

Luke Amos and his uncle Dr John Stone (Kidney Research UK)

"Transplant centres face operational challenges such as a lack of resources and sharing operating theatres with other departments which can mean that surgeons simply run out of time. If we can keep a kidney on a perfusion circuit for twenty-four hours, we can give both the surgeon and the patient more time to receive their life-saving transplant and save these organs from going to waste. Extending this to days will have even greater impact”

John hopes to be able to introduce the method into hospitals and clinical settings within the next three years as he looks to help people who are suffering with similar conditions to Luke.

Sandra Currie chief executive of Kidney Research UK explained: “Patients wait on average over a year and a half for a kidney transplant, some wait much longer and when they do receive the call, they can face a very difficult and tense time involving an urgent journey to the hospital to avoid the risk of missing out on a life-changing organ.

"Unfortunately, we know of many patients who have been called to hospital multiple times, only to be told the donor kidney cannot be used after all. One important reason for this is the very short time available currently to keep the kidney in good condition ahead of the surgery to transplant it. The research that we are funding aims to extend this critical window of opportunity from retrieval to transplant.”

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