A BARNSLEY dad who suffers from a rare disease which affects just two in every million people is fundraising to create a dialysis room at his home in Old Town.

Ben Parker, 42, is currently in ‘end stage kidney failure’ for the second time in his life and relies on dialysis at least four times a week to keep him alive.

His wife, Samantha Parker, 39, has set up a fundraiser to help create a home dialysis room so Ben can be more comfortable while going through the procedure each day.

He is currently undergoing treatment in his daughter’s bedroom - but after Barnsley Council rejected a funding appeal they are now being forced to fundraise for the money they need.

Samantha said: “Ben has always struggled with his health having multiple health problems his whole life.

“In 2018 when our daughter was only a few months old he became very unwell and soon after we were told he had kidney failure.

“After a year of being in and out of hospital and ending up in ICU with swelling on the brain he eventually had to start dialysis.

“We were then told of the extremely rare autoimmune disease Ben has which is called C3G.

“This disease affects around two in every million people and as it is so rare there is no known cure for the disease.”

Ben was then placed on the kidney transplant list as his own was functioning at ten per cent capacity - and miraculously he found a donor within six months.

However after just five years his kidney function began to deteriorate again.

Samantha added: “He had been well for a few years following his transplant apart from some persistent chest infections due to his immune system being suppressed.

“This was a few precious years where we could spend time as family and Ben could enjoy watching our daughter grow up.

“Unfortunately, as is often the case with this disease, in late 2023 Ben’s kidney function began to deteriorate once again.

“A few months later in May 2024 he was once again facing the prospect of a life on dialysis and by this point was extremely poorly again.”

The family decided Ben would have his treatment at his home but after applying for a grant for support from Barnsley Council, they were disappointed to find they were not successful.

He is currently undergoing his treatment in his daughter’s bedroom but the pair have set up a Go Fund Me in a bid to try and convert their garage.

Samantha said: “We applied for a disabled facilities grant to turn our garage into a designated space for Ben to have his home dialysis in April 2024 and naively presumed we would be awarded some funding towards this.

“In the meantime we opted to put all the machines into our daughter’s bedroom as a temporary measure.

“In September 2024 we were hit with a blow from our local council who refused to offer us any help.

“We tried to appeal this but were unsuccessful.

“Our daughter has never known anything other than her daddy always being poorly and it breaks my heart when she says things like ‘when Daddy gets better’ because I cannot bring myself to tell her that he never will.”

A £10,000 target has been set, and more than £2,500 has already been raised to help the family.

To donate to the fundraiser, follow the link on the Barnsley Chronicle website.

https://www.gofundme.com/f/help-me-fundraise-to-create-a-home-dialysis-room-at-home