When Hastoe resident, Ben Standing, first began experiencing unexplained symptoms, he never imagined he’d soon be one of only around 140 people in the world diagnosed with CLIPPERS – a rare brain condition causing inflammation and requiring lifelong treatment. Now visiting Addenbrooke’s Hospital every three to four weeks, Ben is determined to give back to the NHS and support vital research by fundraising for Addenbrooke’s Charitable Trust.
Behind this remarkable act of generosity is something equally vital to Ben’s journey: the importance of a stable, affordable home.
Ben lives in a quiet Hastoe Housing development in Hintlesham, a small rural village just 10 minutes from Ipswich. “It’s a lovely place,” he says. “Farmland everywhere – a typical Hastoe setting.” The development has just ten homes and no through traffic. “It’s peaceful and because my partner’s brother lives opposite and his wife is local so we’re part of a close-knit community. Everyone knows each other.”
Having his support network close-by has made all the difference. “When I got ill, my partner had to keep working so I was on my own Monday to Friday. My partner’s parents live just up the road and would check on me every day. It’s such a safe environment that they could just let themselves in. Even the neighbours who aren’t family are really close – it’s a lovely community.”
As Ben’s condition progressed and he moved from two incomes to one, the value of having an affordable home became starkly clear.
If we were renting privately, there’s no way we could have stayed here. I’m not claiming housing benefit so we’ve had to manage on one income. We simply couldn’t have done that with private rent. Affordable housing is so important and without a doubt, we wouldn’t be able to cope otherwise.
Ben’s aim is to raise money for better equipment and research to support faster diagnosis of CLIPPERS and similar rare conditions. “I know I’m just a drop in the ocean of funding,” he says, “but with better tools, there’s real hope for quicker diagnosis. When you face something serious, that’s when you realise how good the NHS really is. I had a biopsy within a week of being referred; their response was incredible.”
While Ben’s condition can’t be cured, it can be managed and with the support of his family, neighbours and community, Ben has found the strength to keep giving back.
His story is a powerful reminder that when facing serious illness, a decent, safe and secure home is invaluable.
