Family donates organs, time and expertise to save boy's life and inspire game-changing research

Video report by Mel Barham

An 11-year-old from Merseyside has inspired research in the North West that could prove to be a "game-changer" when it comes to transplantations.

Luke Amos was diagnosed with kidney disease when he was just 11 weeks old and has lived with the condition until last year when he was given a transplant.

Seeing him go through gruelling dialysis treatment, his uncle Dr John Stone who is a medical researcher at Alderley Park, switched from his work studying lungs to kidneys.

With funding from Kidney Research UK, John and his team are working on a new method to better preserve kidneys for transplant, which could enable nearly 100 extra operations each year.

Luke was diagnosed with polycystic kidney disease as a baby which means cysts grew on his organ.

Medics warned his parents that he would probably need a transplant, and last year with his kidney function so low, he was put on dialysis three times a week.

Luke explains it made him really lethargic.

"While I was on dialysis I couldn't go on my bike or play football because of my [dialysis] line and I felt even tireder than before because it was draining me the dialysis machine."

Luke's father Carl was found to be a match and so in May 2022, he donated one of his own kidneys to Luke, saving his life.

"Once I discovered that I was a match, I felt so grateful that I was able to help Luke" says Carl. "Because for so long, as a family, we felt so helpless watching him suffer with the illness.

"It was such a relief that I was able to step forward and help him and like any other parent, you would do anything for your kids."

But watching Luke on dialysis, his medical researcher uncle, Dr John Stone, vowed to change specialisms so he could research kidney transplantations in the hope of making a difference, and stop organs "going to waste".

"Having that motivation and that focus keeps you pushing forward. I think sometimes we as researchers, we lose focus when you're just in the lab every day.

John who is a Senior Scientist at Pebble Biotechnology Laboratories continued "But having gone with Luke for dialysis, and seeing patients like him sat there three days a week attached to a machine, you take that back into the lab, and you realise this is really important. We need to get this research into the clinic as quickly as we can."

Dr John has been working on a novel method known as normothermic perfusion. His team are investigating how the process can keep kidneys alive outside of the body for longer and give surgeons more time to conduct life-saving transplants.

"Currently, kidneys will be just put on ice for up to 24 hours, for example. But during this time, these kidneys are getting injured all the time. They're not being supplied with oxygen, they're not being supplied with nutrition, and so they're starting to die.

"So we're using this technology to try and keep the kidneys on a circuit for 24 hours under perfect health conditions, so optimal nutrition, optimal oxygenation and just make the kidney believe it is still in the body. So at the end of 24 hours, it looks as good as when it came out of the body."

They have already managed to keep a kidney at optimal condition for 24 hours and are now working on seeing if they can extend that further.

"This actually could really change the way transplants are done -you can electivise a transplant so you wouldn't have to necessarily do it in the middle of the night when a kidney is offered, you could actually keep this kidney in perfect health for up to 24 hours, which means you've got a window of opportunity to find your patient, get the best match, get your theatre space booked and it also gives you the opportunity to treat these kidneys.

"So if you keep them for 24 hours, physiological, so as if they were in the body, you can treat them and make these kidneys better. So then you're getting the best possible kidney for a patient."

Luke was lucky - a live donation meant his new kidney didn't need to be kept on ice and transported across the country - but in the future that might be needed.

"We know that transplant isn't a cure. We know that Luke will probably at some point in his life have to go through this again. So you know, any kind of innovative solutions that John is working on at the moment is so encouraging."

Kidney Research UK estimate that nearly 100 kidneys a year are not transplanted after retrieval as they are deemed clinically unviable.

As soon as the kidney is retrieved from the donor, there is a small window of time before the organ loses the potential to be a successful transplant.

Cold storage of the kidney is currently the standard method, but the longer the organ is on ice, the greater the chances of damage to the kidney.

Perfusion could offer a solution to storage that does not impact the viability of the organ.

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."

The team believe that their methods could be replicated in a clinical setting within the next three years, directly addressing some of the logistical and operational issues across many NHS transplant settings.

John and the Pebble Biotech team will now look to push the boundaries of perfusion, testing longer times on the circuit as well as exploring how to implement perfusion within NHS hospitals in a cost-efficient way. 

Luke Amos 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."

Luke can now enjoy many of the activities he had to give up while on dialysis including his true passion - football and cycling.

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