A FIT and active grandad died from a disease for which there is no known cause just 36 days after suffering his first symptoms and six days after being diagnosed.
Now the family of Ken Knaggs are planning a special event in his memory to raise awareness of Sporadic Creutzfeldt-Jakob disease (CJD) and boost funds for research into the disease to coincide with what would have been his 76th birthday.
His condition baffled medical professionals and his family say it was only by chance that one of the few Sporadic CJD experts in the UK was visiting another patient on the same hospital ward as Mr Knaggs that he was diagnosed with the disease.
Mr Knaggs’ widow, Julie, said her husband first showed signs that something wasn’t right when, out of the blue, he was unable to park their car.
She explained: “We had been cutting branches off a tree at home and when one snapped off, I thought I had broken a finger.
“He insisted on taking me to the hospital for an X-ray. He could not park the car straight. He just twitched and his eyes went funny and glazed over.”
Mrs Knaggs said the episode lasted about ten minutes, and as her husband had previously suffered minor strokes, she thought this may be what had happened.
“They sent him to Darlington for an MRI, blood tests and a CT scan and nothing showed up.”
As Mr Knaggs continued to suffer further unexplained episodes, his wife said doctors thought he may have a tumour, but again tests were negative.
It was then suggested that Mr Knaggs attend a memory clinic to see if there were any signs of dementia.
“He could not do his crossword. He had done it every day for 40 years. He could not use the TV remote or his mobile phone,” said Mrs Knaggs.
“Then he had another episode. It was like a silent fit and lasted for 15 to 20 minutes.”
After this, it was thought Mr Knaggs was suffering from hemiplegic migraines.
However, the episodes continued and Mrs Knaggs said after each one, her husband’s condition deteriorated further.
“His appetite went, his co-ordination went and he struggled to walk.”
On the day of his appointment at the memory clinic, Mr Knaggs suffered another, more severe attack.
“I thought he had died. It was like he was in a coma,” said Mrs Knaggs. “The paramedics took him to Darlington, then we took him to the memory clinic at Bishop Auckland. When dementia was quickly ruled out, we had to take him back to A&E at Darlington, where he was slumped in a wheelchair.
“Nobody knew what was wrong. A nurse asked us to let her know what the diagnosis was if we ever found out as she had never seen anything like it.”
Mr Knaggs was placed on the dementia ward at Darlington before more scans found a small swelling on his brain. Doctors diagnosed encephalitis and he was transferred to James Cook University Hospital, Middlesbrough.
“When I went there, I was told encephalitis was treatable, but he had lost so much weight and he was not eating,” said Mrs Knaggs.
It was while in James Cook that an expert from the CJD Research and Surveillance Unit at the University of Edinburgh visited the ward into which Mr Knaggs had been admitted to see another
patient with similar symptoms.
“He came and spoke to us and explained what it was. We asked how long Ken might have and were told weeks rather than months – in the end it was just six days.”
Mr Knaggs was born in Shildon and grew up in Hamsterley. He worked as a heavy plant operator and settled with his first wife, Margaret, and their three children in Wakefield.
He met Julie 40 years ago when staying at her parents’ pub in Derby while working on road construction.
The couple, having lived most of their married life at Hamsterley, eventually settled at Etherley Dene.
They were married for almost 38 years and have two children, daughter Emma Spry, who lives in Newbiggin, and son Robert, of Toft Hill.
Altogether, Mr Knaggs was a grandfather of nine.
Mrs Spry said the fundraising event – A Night for Ken – which takes place on Saturday, February 15, at Hamsterley Social Club, aims to raise the profile of what is described as a “one in a million” disease.
“There were just 122 people who died from Sporadic CJD in 2019 in the UK. If this guy from Edinburgh had not come down, dad would have remained undiagnosed.
“It begs the question how many more cases have gone undiagnosed.
“The more people who become aware of this disease, the more people are likely to be diagnosed with it.
“We have got to raise awareness and we don’t know any other way of doing so.
“In the past, mum and I have done charity fundraisers for Cancer Research and raised just short of £6,000.
“However, in the past, we have been inundated with donations and prizes as everyone knows how important Cancer Research is, but this time round, we've not had the support as we have in the past as people just don't know or recognise what it is we’re trying to raise awareness of.”
Tickets for A Night for Ken have sold out. However, donations for raffle and auction prizes would be gratefully received.
“We really want to raise money to help find some answers and raise awareness and we must thank our family and friends who have supported us and already donated many wonderful prizes,” said Mrs Spry.
Anyone who would like to donate to the raffle and auction can contact Mrs Spry on 07905 004299.
Raffle tickets are also available for purchase from Utass (Upper Teesdale Agricultural Support Services), in Middleton-in-Teesdale.
