A dad was diagnosed with a rare autoimmune disease after his symptoms were initially dismissed for hayfever. Ben Parker, 42, had just returned from a holiday in Australia when he noticed he was “lethargic” but put it down to a chest infection.
He went to see his GP who told him it was “seasonal allergies” but when his symptoms continued further tests revealed his kidneys were only functioning at around 15 to 20 per cent. Ben was diagnosed with complement 3 glomerulopathy (C3G) – an immune system disorder that causes severe damage to the kidney and affects just one in every 500,000 people in the UK.
Ben was able to have a kidney transplant six years ago, but has now deteriorated again and is back on dialysis. He has now opted for at-home dialysis – but is currently having to use his seven-year-old daughter Aveline’s room for treatment. The family is fundraising to convert their garage into a treatment room.
Ben, an NHS admin assistant from Barnsley, said: “I just felt really tired and lethargic. I went to see my GP who initially said it was seasonal allergies.”
His partner Sam Parker, 39, a teacher said: “Our daughter doesn’t have a bedroom now, she can’t get to any of her stuff. I think she’d like it to go back to how it was, she often talks about when the machine is moved out.”
Ben started noticing his symptoms in April 2018. When the issues continued, Ben returned to the doctor in June 2018 and got his diagnosis. After a year of travelling to the hospital for dialysis, Ben got the call that he had been approved for a kidney transplant in April 2019.
He said: “I came home from work and received a call saying I needed to come to the hospital immediately, it was the most stressful drive I’ve ever had. It was rush hour, and we had to get there as soon as possible. You just have to drop everything and go.”
The transplant gave Ben four years of improved health, but by late 2023, his health began to deteriorate again, and he was facing the reality of returning to a life on dialysis. This time, Ben and his partner Samantha opted for home dialysis to allow him to be closer to his family. When he applied for funding to convert the garage into a treatment room, Ben was told he did not meet the criteria.
Sam said: “We got a letter saying we’re not getting any funding because we already have a room we can use. We were like, yeah, but it’s our daughter’s bedroom – that was a temporary solution.”
Ben’s daughter now has to sleep in her parent’s bedroom when he uses the dialysis machine late in the evening. The couple has since launched a GoFundMe page that has raised more than £6,500.
Sam said: “It got to the point where we thought, we’re not waiting anymore, this could take months. The page has been really successful, it’s just taken off, we’ve got enough money to do the build now.”
Ben’s daughter was just nine months old when he was first diagnosed, he says his health has prevented him spending time with her in the way he’d hoped.
Sam said: “After having biopsies, Ben wasn’t allowed to do any heavy lifting, so he couldn’t even pick her up for six weeks, she didn’t understand why he couldn’t pick her up. That obviously led to difficulties at home because I had to feed her and be there all the time to do everything for her because he couldn’t pick her up.
“Also when his health is deteriorating, he doesn’t have the energy to play with her. He can’t go swimming because he’s got a catheter line.”
One afternoon, Ben took his daughter for a walk alone and suddenly suffered a seizure due to fluid build-up on his brain due to his chronic kidney disease.
Sam said: “He was lucky strangers found him. If he’d stayed at home, he would probably have died.”
Those who wish to donate to Ben and Samantha’s fundraiser can do so via GoFundMe.