Leighton Buzzard uncle's charity comedy night in honour of cancer fighter and brave nephews with life-threatening condition

A Leighton Buzzard man is holding a charity comedy night in honour of a brave lady who fought cancer, and his nephews who were diagnosed with a life-threatening condition.

Barney Cole, 51, is inviting townsfolk to The Roadhouse Comedy Night on February 17 in Brooklands Residents' Club, Garden Leys, to raise money for Macmillan Cancer Support and the Chronic Granulomatous Disorder (CGD) Society.

Barney, who works as a carer, used to look after Leighton Buzzard resident Rhona Stone, who died from cancer aged 71, while his two nephews, Ben, eight, and Bobby, seven, both have CGD, a rare disorder that prevents the immune system fighting off certain infections.

Encouraging people to support his show, Barney said: "It speaks for itself, really. CGD is a life-limiting disease and if you found out your child had this, you would pray someone would support you.

"It's not as well known as conditions like diabetes; your child could go for years not knowing what's wrong, with something nasty going on inside them.

"It's about making medical teams aware that there are children out there with these rare immunities."

Remembering Rhona, he told the LBO: "She was diagnosed with cancer and in her last days we looked after her until the bitter end.

"She had Macmillan nurses who came out to her, too. I had a good bond with Rhona and it's such a worthwhile cause."

For years, Barney's nephews had gone undiagnosed - and no-one suspected anything was wrong - until a health scare in January 2020.

Bobby was admitted to Stoke Mandeville Hospital because he was "grunting and his oxygen levels were low", and although he came home both he and Ben were admitted a week later, staying in hospital for seven days.

However, X-rays and CT scans highlighted some abnormalities, and the brave lads were referred to a respiratory consultant at John Radcliffe Hospital, Oxford.

The boys' mother, Bonnie Burgess-Biggerstaff, 39, said: "They were diagnosed with hypersensitivity pneumonitis due to a fungus (called aspergillus), causing a huge inflammatory response in their lungs.

"They were then put on long course of steroids. Bobby recovered, but Ben didn’t."

Further CT scan and tests were done, and it was finally discovered that both the brothers had CGD.

However, as well as coming to terms with the diagnosis, Ben had another fight on his hands, when an MRI scan showed that he also had a lesion of aspergillus - a fungus in his brain.

This was because the infection in his lungs had spread, so brave Ben was then put on seven hours of IV medication a day for the next six months.

Bonnie said: "I can't praise the consultants at Stoke Mandeville and John Radcliffe enough.

"If CGD had gone undiagnosed then Ben would have continued to be treated for hypersensitivity pneumonitis and the infection could have been fatal."

The family then had to come to terms with what CGD was, and what it meant for the boys.

The condition means that a person's white blood cells don't work and can't fight fungal or bacterial infections - the cells can engulf them but can't kill them off - causing the body to have an inflammatory response.

As the brothers grow older it could affect their work, mean long periods spent in hospital, and long term periods on IV antifungal medication. It could also affect their growth and weight.

Bonnie said: "It's very rare - only eight in every million are diagnosed with the condition. A bone marrow transplant is the only 'cure' for CGD."

Brave Ben received his bone marrow transplant in September 2021, which involved an intense 10 days of chemotherapeutic treatment to kill off his immune system, ready for a donor’s bone marrow cells to be put into him.

Ben spent 11 weeks in Great Ormond Street Hospital with Bonnie staying with him for company. He is currently home-schooled to prevent the risk of infection and hopes to return in May.

It is thought that he will be able to fight infections normally within two years of the transplant, and it is hoped that Bobby will be able to have one, too.

Bonnie, speaking about how she and husband David Burgess-Biggerstaff, 49, feel, said: "We know they are healthy at the moment but we do worry that they will catch an infection, and that they [the doctors] will be nursing them back to health with serious, big-gun medicines.

"They are both amazing. They are little fighters."

She added: "Barney is being very kind raising money for them and he's been supporting and helping me with the boys - he raised some money last year for them."

A ticket to Barney's comedy night costs £10 and doors open at 7.30pm for an 8pm start until 10.30pm. There will also be a bar and raffle.

The acts include Matt Redmond from Britain's Got Talent, Radio 4 writer Tom Mayhew, and other talented guests.

Please book your tickets by emailing: [email protected].

Barney would like to thank Gemma Stone, Will Ludford, Johnny Murphy, and 'the Bicycle Lady' for their support.

Gemma, Rhona's daughter, said: "I’m raising money for Macmillan in honour of my mum, who sadly passed away on the 14th December 2020, aged 71.

"Macmillan was there for mum and all the family from the start of mum's diagnosis to the very end, and we will be forever grateful for the care they gave to mum. Raising money will not bring my mum back but it will help Macmillan help someone else out just like they did for us."