A mum has told how her daughter, 12, is hooked up to a dialysis machine for 10 hours a day and is left "drained and exhausted" after being given a devastating diagnosis.
Grace Batterson, from Moreton, Merseyside, was found to be suffering from severe kidney disease which has no cure and she is now in desperate need of a double transplant.
With no family donor available, her only hope is that a kind stranger will provide a match and in the meantime she has to have dialysis which removes waste products from her bloodstream in place of her failing kidneys.
Mum Elaine Brewin, 43, said: "She's a little star. Never moans, just gets on with it. She loves school, her friends. She's always smiling, regardless of what's going on."
Grace, who goes to Weatherhead High School, was diagnosed with juvenile nephronophthisis in February last year after Elaine noticed tell tale signs of the genetic disease. Her older daughter Amy, 24, was found to have the same condition in 2014 - with Elaine giving up one of her own kidneys to save her.
"Grace was tired all the time, she had achy legs, she was complaining all the time about being in pain with her legs. My older daughter also had a kidney transplant, and that's how I put two and two together," Elaine told the Liverpool Echo.
"I took her to the GP and insisted on a blood test and the blood test revealed she was in renal failure. She was only 11."
Grace was taken to Arrowe Park Hospital and transferred to Alder Hey Children's Hospital with less than 10% of kidney function left.
Elaine said: "Amy was diagnosed when she was only 15 and was really poorly, with less than 5% of kidney function. I was a positive match, but obviously I only have one spare kidney - I don't have any more to give. It was devastating. We thought we put it all behind us and now we're gutted for little Grace to have to go through it all.
"Grace has dialysis at home for 10 hours each night. She's attached to the machine and once she's on it, she can't do anything else. She can't go to the toilet. She can get out of bed, but can't really do much. It leaves her feeling drained and exhausted, and while it's a treatment for the disease she's got, it's not enough to keep her completely well. She's had a couple of infections, which is to be expected when you have got a line in your tummy.
"She's been on the transplant list since May last year. Our phone is permanently on, and if we don't answer the phone and there's a backup kidney available, we'll have the police sent to our house."
Grace's stepdad Paul was tested as a potential donor, but was not a match, as the blood and tissue (HLA) type of the donor must be compatible with the recipient. He entered the UK Living Kidney Sharing Scheme, which healthy donors and patients sign up to in pairs. This means that if a potential match for one of Paul's kidneys is found, and that patient's partner is a match for Grace, the two pairs will essentially "swap" kidneys.
Elaine said: "Some days you think the call's never ever going to come. She's been on the list now over a year. You feel like you can't plan. We're wanting to go away next year with the children, but if Grace is transplanted she won't be able to travel. It's not knowing one month from the next where we're going to be.
"The longer you're on dialysis, it can have an effect on your heart, so being on the transplant list forever will not be a very good thing to do. You can use it indefinitely, people have used it for 10 years or so, but it will eventually not work as effectively.
"We've seen Amy's complete turnabout from being a child constantly poorly and tired to living in a relatively normal life. She's got a degree, she works full time and she's doing so well. That's what we want for Grace."
Elaine hopes Grace's story will inspire other people to sign up as organ donors. A person's lungs, kidneys, liver, corneas, pancreas, tissue and small bowel can all be donated after their death.
Elaine added: "If any good can come from this it would be to just get people talking about organ donation. When people think about organ donation they think of old people. It's hard to think about children who need transplants, but it's a reality. There's children we've met who might pass away before they get that organ.
"It's strange to say, but I do feel lucky we have a treatment available. Other children, who might need a heart, are in a much more precarious situation than Grace."