Eight-year-old Harry from Warrington has chronic kidney disease (CKD) and is currently being treated with peritoneal dialysis.
Since July 2025, Harry has been taking part in a research trial at Alder Hey, evaluating how effective medication is in treating anaemia in children with CKD.
When asked about being part of a research trial Harry shared:
At first it was scary, but being part of research is actually really fun! I am trying a new medicine that in the future, will help lots of children like me feel better.
I feel like a scientist and a superhero!”
At seven days old, doctors at Alder Hey diagnosed Harry with posterior urethral valves. In this condition, there is an obstruction to the flow of urine from the bladder, which begins before birth and affects kidney development. In Harry’s case, his kidneys did not develop even after the obstruction was removed, resulting in poor kidney function and the need for dialysis.
Since birth, Harry has attended Alder Hey for multiple treatments, operations and appointments, including having a catheter fitted to empty his bladder and a dialysis catheter through which he has dialysis at home each night.
Prior to starting the research trial, Harry’s Mum, Lauren, needed to inject Harry once a week to help manage the anaemia, which was something Harry didn’t like. Every Monday, Harry would be worried and upset about his Mum injecting him with the medication he needed. The research trial enabled Harry to swap the injection for a new medication, which is taken by mouth three times a week.
Mum, Lauren said:
Harry being diagnosed with chronic kidney disease and kidney failure has been really hard. Prior to starting the research trial, I had to inject him every Monday and he hated it. When Dr Jones put us forward for the research trial, I was a little nervous – I didn’t know what to expect
The doctors and medical teams at Alder Hey explained everything clearly to me and answered any questions myself and Harry had. Harry was really excited at the opportunity to try something other than the injection and to see if it helps to make him feel better. He was also excited to try something other than the injection, and although he had never taken medication orally before, he really took to the medication and it became a really positive experience for him.
The research trial has been really positive for Harry. I have seen so many more positives taking the medicine over the injection. Not only in improving Harry’s health but I can also see a positive difference in his anxiety.”
Dr Jones, Consultant Paediatric Nephrologist, said:
Children born with chronic kidney disease have significant health needs, including the need for taking multiple medications which may require an injection; special diets which may not be palatable; significant fluid restrictions and multiple appointments which include blood tests.
Some children, like Harry, will require dialysis, which, although it helps to control the blood salts, only provides about 10 per cent of normal kidney function and many children will feel nauseous, tired and find it difficult to concentrate. Any improvement to their care such as avoiding regular injections through this research trial is important.”
If you would like to find out more information about Research at Alder Hey, please visit our website here: https://www.alderhey.nhs.uk/research/