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‘I’m running the London Marathon to say thanks for my brother’s transplant’

09 January 2023

When Charlotte De Paepe runs this year’s London Marathon for Kidney Research UK, she will be thinking of two people very close to her heart.  

Her grandfather Gordon “Jack” Mason passed away in 2021 at the age of 87, after surviving a kidney transplant 33 years earlier. Her brother Ashley, meanwhile, had a successful kidney transplant last March, so it’s no surprise she now wants to give thanks for the care and support her loved ones have received. 

Charlotte De Paepe and her grandfather
Charlotte De Paepe and her grandfather

 “I’ve always done half marathons and I run as a way to keep fit, so after everything that happened with my brother and my grandad, I thought, ‘Right, I’m going to do it’,” said Charlotte, 33. “The London Marathon has always been on my bucket list, so this has given me the motivation. And I’ve always wanted to do it for Kidney Research UK.” 

While Charlotte always knew her grandfather had received a transplant, it was rarely spoken about due to Jack’s stoic nature and his eagerness to “just get on with life”.

But in July 2021, when her brother was diagnosed with kidney failure after suddenly collapsing one day before work, it felt like history was repeating itself.

“He got up and couldn’t feel his legs,” said Charlotte, from High Wycombe. “He must have then fainted, because he remembers waking up, ringing the emergency services and being rushed to hospital.”

A couple of days later Ashley learned his kidneys had only 3 per cent functionality and he was quickly put on dialysis.

“We were in a state of complete shock, especially my mum, Karen, who was still grieving after losing my grandfather just a few months earlier,” said Charlotte.

Family history of kidney disease

What happened to Ashley, now 35, triggered an urgent conversation within Charlotte’s family and they soon identified a pattern. Three of her great aunt’s five children had also passed away from kidney disease – it felt like more than an unlucky coincidence. 

“We realised it must be hereditary because of how many people in our family had suffered,” said Charlotte. Charlotte’s mum decided to get tested and was found to have the gene for  uromodulin-associated kidney disease (UKD) – a hereditary and rare form of kidney disease which causes the organs to lose function over time. “Mum didn’t put any pressure on me, but said she thought it would be worth me finding out too. My husband and I want to have children, so it felt important not only for myself, but also for future generations.” 

While preliminary blood and urine tests showed no signs of kidney deterioration, further genetic testing revealed Charlotte was also carrying the gene for UKD. Charlotte’s great aunt, one of her great aunt’s daughters and one of her granddaughters also carry the gene. 

“It was a huge shock to find out and I was very upset at the time,” said Charlotte. “But there’s a strange peace of mind, too, because I’d rather know than bury my head in the sand, always wondering if I might have it. I’ll now be checked annually and hopefully I’ll be OK. My mum is 61, fit and well and my great aunt Joy, 78, is also living her life well, so I feel quite hopeful. 

Charlotte De Paepe and brother Ashley
Charlotte De Paepe and brother Ashley

A gift from an anonymous donor

Despite being told it could take 12 to 18 months to find a donor, Charlotte’s brother Ashley was admitted to University Hospital Coventry and Warwickshire for a transplant in March last year.

“It all happened so quickly,” she said. “Within eight months of him collapsing, he had a transplant after receiving a kidney from an anonymous live donor. He recovered well and went back to work in July last year.”

Ashley, who works as a water quality analyst, had his last full check up at the end of November and is now on biannual observations. While nothing significant raised the alarm prior to his collapse, Charlotte said that, looking back, there were signs he wasn’t well.

“Before his kidneys failed, he’d felt ill for around 18 months – he kept getting colds and coughs and just felt a bit lethargic,” she said. “He also had itchy skin and numb legs in the two months leading up to his hospitalisation, but there weren’t any more severe symptoms beyond that.”

Taking part in the London Marathon in aid of Kidney Research UK will be particularly poignant for Charlotte as her mum also ran it for the charity back when she was 33 – the same age Charlotte is now.

“I’m exactly the same age as she was, so she’s teasing me that I’ve got to beat her time, 4 hours 12 minutes,” said Charlotte. “I’m not sure I’ll beat her, but I’m quietly confident.”

Have you been inspired?

Take a look at our events and you could be putting on a Kidney Research UK t-shirt like Charlotte and helping to raise money to make more research happen.

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