John Middleton, of Hallam Close, Filey, lost his son Matthew Parker 22 years ago.
The then-19-year-old became one of the first victims of the disease after coming into contact with bovine meat products contaminated with BSE.
As his father recalled, the symptoms of the condition, which can lie dormant for up to 50 years, started to appear just 12 months before his death, when pain in his knees began to affect his ability to walk.
“He was 6ft 8in so trying to hold a big 18-stone lad up was really hard,” said John. “At the time I thought he was on drugs, his speech was slurred, he was shaking, he started chewing his collar. I thought ‘what’s going on?’.”
It was only after a series of tests that the trainee chef was diagnosed with the degenerative brain disease, for which there is no cure and that by 1996 – the year in which it was officially recognised by the government – had already claimed the lives of ten people.
“It was confirmed to us on February 14 1997 at the CJD Surveillance Unit in Edinburgh. Two consultants sat us in a room and asked ‘what are you going to do with your son now?’.
“Then they went ‘whatever you do don’t go to the press, they’ll make your life hell’. It was such a cruel thing to say.”
Matthew passed away only a month later in a care home for disabled young adults.
A few years later three other people connected to his hometown of Armthorpe, near Doncaster, also died of vCJD.
One, 28-year-old Sarah Roberts, lived on the same street and attended the same school yet a connection between the two deaths was never found and to this day, Matthew’s family still don’t know when or how he and the other victims might have caught the disease that killed them.
“That’s a million dollar question, it could have been anything; cheap cuts of meat, burgers, sausages, children’s sweets, toothpaste. We just don’t know.”
After Matthew died, John started to campaign to find out the truth about how infected meat was allowed into the food chain in the 1980s and who was to be held accountable for the death of his son.
Despite being warned that going public would have a negative impact, the 64-year-old was determined to speak out.
He was an active member of the Human BSE Foundation and has been on various TV programmes to tell Matthew’s story to anyone who was willing to listen.
Overall, 178 people are thought to have died of vCJD in the UK and in 2013, a study by the British Medical Journal revealed that around 1 in every 2,000 people may carry vCJD proteins.
Long incubation periods for the disease mean that the true number of possible victims is still unknown.
“I want people to know that it’s not over, it’s still a ticking time bomb. It might not happen in my lifetime but it will explode and the government are still trying to hide it.”
After getting in touch with investigative journalist Christine Lord, who lost her only son Andrew Black to vCJD in 2007, John has become involved with a new documentary directed by Partikular Films and narrated by Ian Reddington called ‘Cows, Cash and Cover-ups? Investigating vCJD’.
The short film looks at the devastating impact of the BSE crisis and the actions and lack thereof of the government and the authorities in the farming and food industries.
It also includes interviews with some of the families of those who died of vCJD who are now united in their call for a criminal inquiry to bring justice to their loved ones.
John added: “Matthew was a fantastic kid, he was special. I think about him every day.
“You can’t explain to anyone what it’s like to lose a child, you’re not made to watch your children die. It was just heartbreaking. It tore me to pieces and it still does.
“All we want is for the truth to come out and for someone to say ‘yes, it was our fault, we allowed it, we’re sorry’.”
‘Cows, Cash and Cover-ups? Investigating vCJD’ is part of this year’s Royal Academy of Arts Summer Exhibition which runs until August 12 and is available to watch on Amazon Prime and Vimeo.