After being dealt the devastating news their two-year-old son, William, had a rare kidney disease and would need a transplant, Nancy and James Balestrini instantly put themselves forward to donate.
But little did they anticipate they would both end up giving him their kidneys to help save his life.
Their rollercoaster journey began in January 2010 when William was born. A routine 20-week scan in Nancy’s pregnancy had suggested there could be problems, but it wasn’t until 12 hours after he was safely delivered that alarm bells began to ring.
William had become very lethargic and wouldn’t feed properly, explains Nancy, 35, a nurse from Crawley.
“After tests showed his blood sugar had plummeted dangerously low and his kidneys weren’t working well, he was rushed from our local hospital in East Surrey to Great Ormond Street Hospital (GOSH).”
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William had been born with autosomal recessive polycystic kidney disease. This rare disorder causes cysts to develop on the kidneys which damage the tissue and can eventually lead to renal failure.
William before his first transplant (Collect)
William is 14 nowAfter two weeks doctors were able to stabilise William’s condition with medication and he was discharged.
Life seemed to return to normal for the family, but at a routine meeting with their local paediatrician when William was 10 months old, it was revealed his blood levels were dangerous again.
Nancy says: “We had been devastated by his diagnosis when he was born, but never once did we think we would have to think about both of us donating our kidneys,” says Nancy. “Now we were being told he had very high potassium and needed emergency treatment. It was terrifying.
“From there on, William’s kidney function started to decline and he needed a feeding tube. By the time he was 18 months, he’d been put on the transplant list. To our relief, both James and I were told we were both donor matches. All we wanted was for William to be well. I’d only just had our second son, Arthur – so James put himself forward.”
In October 2012, HGV driver James, now 43, underwent a four-hour operation to have his kidney removed at Guy’s Hospital. William was waiting with Nancy at GOSH to undergo his own seven-hour surgery.
James during his operation (Collect)
And Nancy during hers (Collect)“It was the longest day of my life,” she says. “At one point, I didn’t know what was happening with either of them. It was horrendous.” Thankfully both operations were a success and a month later, William was back at home.
Sadly, their relief was to be short-lived. In March 2013, after his health started to decline again, they were told William’s kidney had ‘acute rejection’. Despite the horrendous news, doctors were able to treat him and stabilise the kidney. Things then finally began to settle for the Balestrini family. “Everything improved for quite a few years,” says Nancy. “William was able to go to school at the age of five and we almost began to forget everything we’d been through.”
By the time he reached eight years old, William’s condition had worsened and a biopsy revealed his kidney was now entering chronic rejection. “It was gutting,” admits Nancy. “We were told we only had a few more years left with James’ kidney functioning at all.”
Doctors were able to keep the transplanted organ going efficiently enough to avoid further intervention for three years, but by the times he was 11 and a half, in the summer of 2021, William had to begin having dialysis to remove waste products and excess fluid from his blood by machine because his kidneys had stop working entirely.
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William with mum after his second operation (Collect)
"We are in such a good place"“He had dialysis four nights a week for eight hours,” says Nancy. “James and I were both working and when I look back, I don’t know how we coped but we just did.”
By now, the family knew William would need another transplant, but they were forced to wait. The Covid pandemic meant there was a huge backlog despite Nancy being an ideal match, and the go-ahead for this second transplant operation in the family’s lives didn’t come until April 2023. Nancy underwent four hours of surgery at Guy’s Hospital to have her kidney removed while William waited at Great Ormond Street. Both procedures were a huge success.
“I didn’t care about my own surgery,” she says. “I just wanted to see William well again. And he really is now. He is thriving on this kidney. He needs minimal medication and he couldn’t be happier.”
Beaming as she talks about how well William, now 14, has coped with all he has been through, Nancy says she is also hugely proud of the resilience shown by her two other children, Arthur, now 11, and Ellie, nine. “It’s been tough for them,“ she adds.
The Balestrini family: (L-R) James, Ellie, William, Arthur and Nancy“But they have both been so understanding. We’ve also had some fantastic help from the Rainbow Trust children’s charity that gives practical and emotional support to families with a child who has a life-threatening or terminal illness. Our lovely Family Support worker, Janet, has been incredible. The focus has been on William a lot, so I did not want Arthur and Ellie to feel as though they had been forgotten about. She talks to them and takes them off to play games.”
Ellie has been chosen to represent the charity at this year’s Carfest family fundraising festival in August which donates a percentage of ticket sales and all its profits to UK children’s charities including Rainbow Trust. “It’s going to be so lovely to do something so fun together finally,” says Nancy. “We’d not been able to do anything like this for so long. We recently had our first proper family holiday too. We are in such a good place. It’s our hope this continues for many more years to come.”
- Part of this year’s profits from Carfest (carfest.org) will be donated to the Rainbow Trust Children’s Charity (rainbowtrust.org.uk)
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