Help stop more children going through the same as Charlie this Christmas.
Nephronophthisis is the number one genetic cause of kidney failure in children.
Charlie has nephronophthisis, a genetic kidney condition that causes the tiny filtration tubes in the kidney to malfunction leading to kidney scarring and cysts. It caused Charlie's kidneys to fail when he was 11 years old.
Charlie missed his final week of primary school as he'd gone into renal failure. His kidneys hung in there until just before Christmas last year, but he then had to have emergency surgery to be prepared for peritoneal dialysis. After two cancelled surgeries, Charlie went home on Christmas eve.
For Charlie and his family, they completely missed out on Christmas, it was a moment lost. He was very poorly and in a lot of pain. There was no laughter, just tears and lots of worry.
Looking to the future, Charlie needs a kidney transplant. Both his parents have been turned down as a donor, but they are hoping a kidney might become available for their son soon. Further into the future, Charlie is likely to need several more transplants in his lifetime.
Currently there is no cure for nephronophthisis. There's no stopping it. But what if in the future there was a treatment for nephronophthisis?
"As a parent, you’d do anything for your children. You’d give them your last breath. So to be told that I actually couldn’t be a solution to Charlie’s problem… that was absolutely devastating." Melina, Charlie's mum.
Research gives a glimmer of hope
Gifts from Kidney Research UK supporters are helping to fund Professor John Sayer make amazing progress in his search for a treatment for the childhood kidney disease, nephronophthisis. His research could save the kidneys of children like Charlie.
Professor John and his team have been searching for a drug treatment for nephronophthisis, from 1,200 drugs they have found 12 that have a high chance of helping patients.
Right now, they are running a three-year project to test the in the lab. A project like this is expensive but thanks to hundreds of individual donations we're able to fund it.
For families like Charlie's, Professor John's research is giving them a glimmer of hope knowing that there is someone working to find a treatment for Charlie's condition.
Make a gift today to make more research like this possible.