“I’m not really sure where to start with a story like this…” is what I said to our photographer Alex as we drove to meet up with Fiona and Dave, leaders of BK’s Heroes and parents to its founder, Ben King; reading about Ben’s story online was moving, but hearing it from the perspective of those who lived it was even more so, which is why I’ll start there.
From being an infant, Ben had health problems and was diagnosed with chronic kidney disease. So, Ben’s journey with the NHS began quite young in his life, and it was constant.
When Ben’s kidneys began to fail, the decision was made for both parents to start testing for donation. It was found that his Dad was slightly more compatible – so when Ben was seventeen, he had the transplant.
“I gave him one of my kidneys” says Dave, “which kind of gave him a new lease of life for a while. In fact, Fiona asked him ‘are you looking forward to feeling well again?’ and Ben said, ‘I can’t remember what it’s like to feel well.’ So, it was nice to give him the opportunity to have more of a normal life. That’s when he began his work as a chef, going out with his mates and doing all the things that young people are supposed to do.”
Unfortunately, as Ben’s underlying illness began to pick away at his new kidney, a brain cancer diagnosis meant that testing for another transplant had to stop; if you have kidney failure you can’t have chemotherapy, and if you have cancer you can’t have a transplant, so there was no other option. He was diagnosed with brain cancer in September 2014, and he lost his battle in February 2016.
“We’re biased but he was a very loving person, very open, the life and soul of the party and liked to be the centre of attention. Unlike me – I tend to hide at the back most of the time and looking back over my life, I am quite jealous of how open and gregarious he was. He was able to
integrate himself into any situation without any kind of nerves. He could go into a room where he didn’t know anybody, and half an hour later,
everybody was buying him drinks – I think that’s probably why he did it.” Laughs Dave.
Sadly, towards the end of his life the brain tumour began to affect the personality and tact that his family had long known and loved. As they cared for their son at home, he struggled with walking, talking and thinking for himself.
“Ben went from being happy go lucky lad about town to somebody who more or less resembled a sufferer of Alzheimer’s or dementia. A lot of people thought Ben was walking around fine one day, and the next day he died. But that was Ben’s choice, he wanted people to remember him as the cheeky chappy that was everybody’s friend. He didn’t want them to see the suffering that he went through. This again is a testament to
the kind of person he was.”
He was the kind of person to start a charity, founding BK’s Heroes with the aim of raising £10,000 each for kidney disease and brain cancer research, and giving back to the NHS after a lifelong relationship with the service. It all started when he was offered the money to take the trip that topped his bucket list – a family holiday to Florida.
“Ben said thank you very much – I’ll still take your money, but I’d like to use it to start my fundraising, and that was really where it all started. He said ‘I’m lucky Mum because my initials are BK and I’ve got brain and kidney disease. He actually asked the doctors if they could sort him some diabetes out because his middle name is David” smiles Fiona, “Sadly Ben didn’t see that £10,000 each achieved, but he made us promise to carry on with the charity after he died.”
The pair of retired-police officers, alongside his brother Dan, kept their word. Through their annual ball, golf days, psychic nights and family fun
days; partnerships with XLCR, Marsden Park Golf Club and Nelson Ladies Football Club; alongside their ‘heroes’ raising funds through sponsored runs and challenges such as abseiling, skydiving, and going for a for a year without eating takeaways (The most courageous of the lot in my opinion), the charity has managed to raise over £160,000 for its cause.
“He kept us busy before and he is definitely keeping us busy now. It is rewarding though, because we are very passionate. We like to keep people informed about what we are doing with their money, and we like to have people feeling like they are part of the big Heroes family. We don’t want to be the sort of charity where someone comes along and says here’s five pounds and they never hear anything about what’s happened to it.”
The charity’s core purpose is raising awareness and funding research; so far the charity has funded a Ben King legacy renal research nurse for the dedicated research unit at Preston Royal, and are currently funding three years of scientific study for one student at the University of Central Lancashire, looking into the correlation between brain cancer and Alzheimer’s.
“ONE OF OUR SUPPORTERS SAID, ‘YOU’RE NOT A CHARITY, YOU’RE A MOVEMENT AND I FEEL PART OF IT’”
“People with Alzheimer’s don’t seem to get brain cancer and vice versa, so they are looking at why that happens and if there’s any way in the future they can use that to help combat both sides. We work quite closely with them – they come to our events and they come to the house, and we make it so she feels part of the family – we tell her we own her now don’t we.” says Fiona, and the pair laugh.
Alongside this, the charity also works to improve the day-to-day lives of kidney disease and brain cancer patients and their families. They have donated and funded transportation, donated entertainment to the hospital to help with patient comfort and rehabilitation, helped to fund an upgrade to a brain surgery and illness ward’s sanctuary garden that had fallen into disrepair, and they also offer emotional support and advice.
“My phone is on 24/7; the families that we work with know that they can ring us up or meet us for a coffee and we’ll listen to them because sometimes that’s what they need. That one to one, not just somebody on the other end of a computer. We’ve lived through it, so we have an idea of what they might be going through. Ultimately, it’s important to try and find cures, but also, it’s about making the journey that all those people are on, that little bit easier to cope with.”
And now, in the process of planning a fundraiser for an innovative piece of equipment for Preston Royal, when that comes into fruition, the hospital will be the centre of excellence for that piece of equipment, establishing Lancashire’s status as a hub for brain cancer and kidney disease research and treatment.
“One of our supporters said, ‘You’re not a charity, you’re a movement and I feel part of it.’ Potentially the benefits of what’s happening with the research could help all mankind suffering from those kinds of diseases, but we are very much, at the moment, a local based charity. The more we grow the wider the net of our catchment area can be. Our tendrils will spread.”
The future looks bigger and busier for the family, the charity and its heroes; with plans to write a book about their journey with Ben, and hopefully one day, to open a retreat for patients and their families. For Fiona, the next year will be particularly poignant, as she is in the process of becoming an altruistic kidney donor, despite her own previous health issues, including a low-functioning kidney and a benign tumour.
“She’s a bit tenacious is the lady sat to my left, and she wouldn’t let it go. And so, she put their arms up their backs and finally managed to get
them to re-test her and her kidney function had improved again, which isn’t supposed to happen.” Dave comments with pride.
“It was something that I felt quite strongly about,” Fiona replies “we know the devastating effect that living with kidney failure can have on somebody and their family. So, I battered on and talked them into letting me test again. People always say it’s amazing what you are doing, I always say, ‘no, it’s the medical team who can remove my kidney and transplant it into another person who are the amazing ones.’ Also we would not be able to keep the charity going without the help of all of our Heroes, they are the amazing people who make it possible with all their amazing fundraising and support.”