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Celebrating my two daughters’ kidneyversaries

19 March 2024

For Elaine Brewin, every kidneyversary deserves a celebration, but on 6 February 2024 she marked a particularly poignant milestone – 10 years since she donated a kidney to her eldest daughter, Amy. 

Mum, dad and two daughters at a football match
Paul, Grace, Amy and Elaine

Amy was 15 when she was first diagnosed with juvenile nephronophthisis, an inherited condition that causes scarring and cysts to form in the kidney. 

Recalling how the diagnosis came about, Elaine, a 44-year-old, civil servant, from Moreton, Merseyside, says: “Amy just wasn’t herself at all. She complained about pains in her legs, but the GP initially said it was growing pains and recommended physio.” 

“That didn’t help, and by the time she went to the doctor again, several months later, she was really unwell. She was vomiting all the time and couldn't keep anything down. Eventually, she was sent to hospital and diagnosed with bulimia, but when they took her blood tests, they revealed she had kidney disease.” 

“At that point, she had less than five per cent kidney function and nobody could believe she’d actually managed to walk into hospital herself.” 

Donating a kidney to my eldest daughter

That night, Amy was transferred to Alder Hey Children’s Hospital in Liverpool and began haemodialysis. After she was told her daughter would need a kidney transplant, Elaine put herself forward as a donor and, following tests, was found to be a good match.  

On 6 February 2014, a successful transplant went ahead, after which both Amy and Elaine made an excellent recovery.  

Speaking about their recent kidneyversary, held at one of their favourite local pubs, Elaine says: “Every year I buy a balloon with our kidneyversary number on it. We also have a cake and then Amy and I sing Happy Birthday to the kidney. It’s a special moment for both of us to share.”  

Mum and daughter in a restaurant with a 10 balloon
Elaine and daughter Amy

A second diagnosis in the family

While both mother and daughter recovered well, Elaine’s heart sank when, in 2022, Amy’s younger sister Grace, aged 11 at the time, started to show signs that she might be suffering from the same condition.  

Elaine, a mother-of-eight, says: “I was always on red alert for symptoms in all my children. I have a genetic mutation and so does my ex-husband, so our children had a one in four chance of having kidney failure.” 

Man and girl giveing a thumbs up while in hospital
Paul and Grace in hospital

“When Grace started to complain that she had pain while walking, I could see she was beginning to present in the same way as Amy. I remember thinking, ‘this just can’t be happening again.’ Suddenly, there was a sense of history repeating itself.”  

Elaine’s worst fears were confirmed when Grace was also diagnosed with juvenile nephronophthisis. And having already donated one of her kidneys to Amy, she felt powerless to help. 

Luckily, Grace’s stepfather, Paul, 48, stepped forward as a potential donor and, although he wasn’t found to be a suitable match, he decided to join the UK Living Kidney Sharing Scheme, where potential donors and patients sign up to be paired with a compatible set of people. 

Elaine says: “My husband felt very strongly that he wanted to help Grace, even though he wasn’t a direct match.” 

Another kidneyversary to celebrate

While waiting for a suitable match to be found, Grace had peritoneal dialysis for 10 hours a day over a period of 17 months.  

Elaine says: “Waiting for a match was agony. It’s that constant state of not knowing, always wondering, ‘will it be today?’ It’s horrible to be constantly on alert, in case the phone rings. But last August, a match for one of Paul’s kidneys was found and that person’s healthy partner was a match for another patient – whose partner was in turn a match for Grace.” 

The operation finally took place in September 2023, and both Grace and Paul have recovered well.  

Elaine says: “Paul coped with the operation so much better than I did. He was up and about in days, whereas it took me a good four weeks before I started to feel OK. I’ve had another child since I donated and Paul’s completely back to normal, so it’s fine. We’ve even got matching scars. And this year, Paul and Grace will celebrate their first kidneyversary.” 

Having watched two of her children go through the kidney transplant process, Elaine is passionate about raising awareness of organ donation. She says: “Donation is vitally important and if you want to donate after your death, you should make your wishes known. For a family like us, with experience of being on the deceased waiting list, we’ve really been through the agony of waiting for a donor. By donating, you can change someone else's life entirely.” 

Cup of coffee on the table next to two kidneyversay celebration greeting cards

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Help us by raising funds so that all kidney transplant recipients and donors can celebrate their kidneyversary too.

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