Ben had just returned from holiday
A father was diagnosed with a rare autoimmune disease after his symptoms were initially brushed off as “seasonal allergies”. Ben Parker, 42, felt “lethargic” upon returning from an Aussie getaway, attributing it to a chest infection.
However, a GP visit led to the dismissal of his condition as mere hayfever. Persistent symptoms prompted further tests, revealing his kidneys were operating at a meagre 15 to 20 percent capacity.
Ben was struck with the diagnosis of complement 3 glomerulopathy (C3G), a kidney-damaging immune disorder that’s incredibly rare in the UK, affecting only one in half a million people. Six years ago, Ben underwent a kidney transplant but has since faced a setback and is undergoing dialysis once more.
Choosing home dialysis, Ben now finds himself in the unfortunate position of using his young daughter Aveline’s bedroom for treatment. The family from Barnsley, South Yorks, is rallying funds to transform their garage into a dedicated treatment space.
The NHS Admin Assistant recounted his ordeal: “I just felt really tired and lethargic.”
He recalled the initial diagnosis from his GP: “I went to see my GP who initially said it was seasonal allergies.”
His partner Sam Parker, 39, a teacher, shared the impact on their family life: “Our daughter doesn’t have a bedroom now, she can’t get to any of her stuff.”
She added, reflecting on their daughter’s feelings: “I think she’d like it to go back to how it was, she often talks about when the machine is moved out.”
Ben first noticed something was amiss in April 2018, but his concerns were initially dismissed as seasonal allergies.
When persistent symptoms led Ben back to the doctor’s office in June 2018, he was faced with a life-changing diagnosis. After enduring a year of hospital visits for dialysis treatment, April 2019 brought some hope when Ben got the news that a kidney transplant was on the horizon.
He recalled: “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 granted Ben a four-year reprieve from his health woes, but towards the end of 2023, his condition took a turn for the worse, leaving him staring down the grim prospect of reverting to dialysis dependency. This time around, opting for a semblance of normalcy, Ben, alongside his partner Samantha, decided on home-based dialysis treatment, wishing to maintain proximity to their family.
Facing obstacles to modifying their garage into a treatment space, the couple were disheartened by the response they received. Sam expressed their frustration: “We got a letter saying we’re not getting any funding because we already have a room we can use.”
They felt overlooked, as she added: “We were like, yeah, but it’s our daughter’s bedroom – that was a temporary solution.”
Now, their daughter relinquishes her room for Ben’s late-night treatments, sleeping instead in her parents’ room.
In an effort to take control of their situation, the couple started a GoFundMe campaign that has garnered impressive support, raising upwards of £6,500. Sam shared their proactive stance: “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 life took an unexpected turn when his health struggles began just as his daughter was nearing her first birthday, stopping him from creating the father-daughter memories he had dreamt of. Sam shared the impact on their family life: “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.”
The severity of Ben’s condition meant that his energy levels were low, preventing him from engaging in playful activities with his little girl. “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,” Sam recounted.
In a frightening incident, Ben experienced a seizure while out walking with his daughter, caused by fluid accumulation in his brain due to chronic kidney disease. Recalling the incident, Sam said: “He was lucky strangers found him. If he’d stayed at home, he would probably have died.”
Ben and Samantha’s fundraiser is on GoFundMe.