Family’s tribute fund for mum’s chosen charity
When John Lewis met his wife Katy, he knew from the outset that she had a hereditary kidney condition called PKD, where cysts form around the organ.
After her health started to deteriorate in the mid-noughties, Katy had a living organ transplant from her younger sister Julie, and was able to live life to the full again.
Sadly, mum of two Katy developed cancer, which was diagnosed last year, and she died aged 53 in October 2022.
Now her husband John has set up a tribute fund for Kidney Research UK in her name and has been overwhelmed with the amount of support the family has received.
Enjoying family times
Katy lived for the special family times,” John, 55, says. “When the children were younger, we enjoyed the time we had with them. When they got older, Katy and I bought a motorhome and we’d go away most weekends.
“We also have a beagle and we were really part of the beagle community, and would go to beagle festivals.”
The couple first met in a pub in 1987, when John was 20 and Katy was 18. He worked in the army as a port operator and had been posted to Southampton, and Katy lived on the edge of the New Forest. They married in 1989 and went on to have two children, John, 28, and Georgia, 24.
Struggling with health
He says, “I knew pretty much straight away that Katy had this problem, but it wasn’t until much later, around two years before she had her transplant in 2008, that her health really started to fail, and she was struggling all the time. She was tired, really prone to infections.”
After spending seven years at RAF Brize Norton, in 2007 John and Katy moved to Lincoln. He says, “She came under Leicester Hospital then, and they were surprised how close she was to needing dialysis.”
Katy’s mother Maureen, who also had the condition, had successfully received a kidney donation from her sister Esther. Inspired, Katy’s younger sister Julie wondered if she could do the same for her. John says, “She said, ‘Rather than you go on dialysis, let’s see if I’m a match.’ She turned out to be a very good match and donated her kidney.
“Two years later they removed Katy’s old kidneys as well as they were causing some pain and infections, and after that she was like a new person. She was so full of life, and loved it. In the past few years, she’d gone back to work and got a job at Newark and District Council.”
When their children turned 18, both were tested to see if they had inherited the genetic condition. John was clear, but sadly it was confirmed Georgia does have PKD.
“We were crossing our fingers that she wouldn’t have it, but she does. We made it a bit of a family joke, she would laugh about the fact her brother’s the favourite, and now she’s got the kidney disease too. But thankfully she’s fine at the moment. She has annual blood tests and no ill effects so far.”
Sadly, last year, Katy was diagnosed with non-Hodgkins lymphoma, and the anti-rejection tablets she took for the transplant were thought to have been one of the contributing factors.
Shock diagnosis for Katy and John
John says, “She had a bad back and we went to the doctors a couple of times. She couldn’t get comfortable and nothing was working. She took herself to A&E one day as she couldn’t stand the pain and after tests they discovered the cancer. She went on chemo straightaway.”
Sadly, two weeks after Katy was diagnosed, John was diagnosed with bowel cancer. He had to go to hospital for treatment shortly afterwards and there he was told it had spread and he has terminal stage 4 liver cancer.
“It was a real shock,” he says. “But we got through it together, which helped. It was a good feeling that we knew what each other was going through and one of us could pick the other one up when we were down. As a family, we’ve always tried to look on the bright side. The kids have been amazing, as for both parents to get diagnosed within weeks of each other must have been incredibly hard for them as well.”
Eventually, Katy’s cancer spread around her body and she died in October. Despite their devastation at losing Katy, the family are determined to do all they can to raise money for Kidney Research UK, and after her death put up a tribute on her Facebook page.
Fundraising in Katy's memory
“I thought we’d raise a couple of hundred pounds but we’ve now hit £1,780. People have been really generous,” he says.
“The thing is, unless you’ve actually come across it or you’re living with someone who has a kidney condition, you don’t understand it.
“Kidney Research UK was always Katy’s chosen charity, and she did a lot of reading about her condition and kidney disease so knew how important the work they do is. She liked to support other people and help them through their diagnosis too.
“Katy and I had talked together about setting up a fund to raise money for Kidney Research UK. Especially with Georgia having it, our hope is that one day our contribution could help her, and people like her. Every bit counts.”
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