Grandad killed by brain disease that affects just one in a million

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A Lancashire businessman and loving father and grandfather has died of a form of the rare brain disease CJD – which strikes just one person in a million.

However, his death is not linked to the variant form of the illness associated with mad cow disease and infected beef.

Danny Doherty who has died of CJD at the age of 69. With his grandson Louis in 2009

Danny Doherty who has died of CJD at the age of 69. With his grandson Louis in 2009

Danny Doherty, 69, of Hoghton, near Preston, died within three months of diagnosis of sporadic Creutzfeldt Jakob Disease, an incurable rapid form of dementia.

His first symptoms were forgetfulness and getting lost when driving familiar routes.

Danny’s devastated family today paid tribute to him and revealed how the cruel illness stole him “piece by piece” until he was unable to walk, talk and see before he died last month.

Today the Evening Post tells Danny’s story as we launch our series CJD: The Hidden Tragedy, looking back at the disease and how, contrary to belief, it has not gone away.

Each day, he was a little less Dad. CJD turns the brain to Swiss cheese. Dad was taken from us piece by piece.

Danny’s wife of 48 years, Jean, said: “This devastating illness is hugely distressing.”

Danny, 69, had a natural entrepreneurial flair. After leaving school at 15, he got a job with an auto electrical parts distributor. He steadily climbed the ladder and became their youngest ever area manager.

After 14 years learning the trade, Danny and business partner Bob Attewell decided to start their own business. They sold their homes to rent premises at Walton Summit and formed Leyland Auto.

The business was a success and grew rapidly. Danny was MD until they sold Leyland Auto when he was 55.

Danny Doherty who has died at the age of 69 of CJD.'Danny and Jean at a wedding just weeks before his CJD diagnosis

Danny Doherty who has died at the age of 69 of CJD.'Danny and Jean at a wedding just weeks before his CJD diagnosis

After retiring, Danny became involved as a consultant with Merlin Diesel and worked there almost full-time until his illness.

Danny, who married Jean in 1967, was overjoyed when they had son Gary within a year. However, tragedy struck when Gary became ill with leukaemia and died two months before his third birthday.

The couple had three more children – Louise, now 42, Shelley, 39 and Paul, 36. They also had grandchildren Louis, Maisie, Minna, Ned, Monty and have another on the way.

Danny’s son Paul says: “Dad absolutely loved work and all the wheeling and dealing.

“He had a warm and affectionate personality. People thought the world of him.”

In June, Danny’s sister Bernadette, who had battled cancer for a number of years, was dying at St Catherine’s Hospice and Danny visited her daily.

Danny’s family say some of his early symptoms were clouded as they put it down to stress.

Paul recalls: “We noticed little things in early June with my dad forgetting things. There was certainly an awareness in Dad that something wasn’t quite right. You would see him shaking his head as if trying to clear the fog and confusion.”

Danny began experiencing problems driving on familiar roads. On one occasion, he was driving home from the hospice and rang Jean to say he was lost.

Jean recalls: “He said: ‘I don’t know where I am. They keep changing the road layout.’

“I directed him home. But I felt it was strange.”

Danny’s sister Bernadette died on June 27 and things accelerated. Paul says: “I remember looking at my dad and thinking there was a vacancy. He seemed a shadow of himself.

“He forgot things and misread situations and wasn’t as animated.”

Danny’s worried family thought he may have suffered a stroke. They went to the doctors and were told to keep a diary logging unusual incidents.

Paul says: “By this time, we knew it was already beyond that. The number of things happening that weren’t typical of Dad were 10 to 15 a day.”

Paul booked a private consultation for Danny in Manchester. However, the very next day, things deteriorated when Danny got lost on his way to work.

Paul, who lives in Leeds with wife Katy, says: “All we knew was he set off for work at 9am and still hadn’t arrived at 11am despite it being a 10-minute journey. He wasn’t answering his phone so we were really worried. I was in Leeds so traced his phone and directed my mum. My mum drove out and found Dad lost in an area he’d driven in all his life.”

Paul drove to Preston and took his dad straight to A&E.

He says: “My main concern was he’d had a stroke and could have another. At this stage, my dad was still very lucid and articulate. He came across as normal and intelligent.

“He was convincing and persuasive and told doctors his symptoms were mild. However, when doctors assessed him, there were certain things he was getting wrong.

“If doctors asked ‘What did you have for lunch today?’ or ‘Where did you sleep last night?’, he struggled to answer.”

Danny was kept in hospital for a week and underwent an EEG, lumber puncture and an MRI scan. The MRI showed inflammation to an area of the brain which doctors though was consistent with CJD.

“Dad was discharged while they waited for results then went back in for results and tests to assess brain activity.

“By this time, we suspected CJD. We looked up rapid onset dementia and one of the things that came up was CJD.”

Doctors sent Danny’s results to the National CJD Research and Surveillance Unit in Edinburgh and in mid July, the family was told it was almost certain Danny had sporadic CJD – which affects around one in a million people.

Sporadic CJD is not linked to BSE or infected beef and is a natural condition caused by a rogue protein in the brain. It usually affects people aged between 50 and 70 and causes rapid dementia. It is not known why it develops.

Paul says: “Dad was discharged from hospital. We were told there was nothing they could do. By now, Dad’s symptoms were very pronounced. His short term memory was practically non existent.

“He had forgotten basic things like how to brush his teeth or have a shower.

“He was incapable of looking after himself. We wanted to care for him at home. But we never realised how quickly he’d deteriorate.”

The family contacted the CJD Support Network who offered support and advice. They received help from the Crisis Team until carers were in place.

Paul says: “Dad was hallucinating and getting up during the night to get dressed for work. One day, he flooded the bathroom. The carers were brilliant and treated him like a family member.”

Danny’s daughters Louise, who lives in London, and Shelley, who lives in Abu Dhabi, returned home to spend time with him.

Paul said: “Even though Dad was getting worse, there were still glimpses of him. There were lucid moments where he was funny and silly and you could have a laugh and joke.”

Danny became unsteady on his feet and lost co-ordination.

Paul recalls: “The speed of deterioration was so fast, every day, there was a marked change.

“Each day, he was a little less Dad. CJD turns the brain to Swiss cheese. Dad was taken from us piece by piece.

“This was the most horrible part of the illness.”

Danny lost the ability to walk and his appetite waned. He began talking less and his eyesight deteriorated. A few days before his death, he was blind.

Danny fell into a coma and died peacefully on August 1.

His funeral was held St Bede’s RC Church in Clayton Green on August 14 with more than 500 people.

A spectacular fireworks display was held that evening choreographed to music with Space Oddity, Rocket Man and Let It Be. Paul says: “It was very emotional and a fitting way to say goodbye.We felt we did Dad proud.”

Jean says: “Danny did lots for charity, but didn’t want recognition. He did it purely because he wanted to.

“He never coveted money and felt having good fortune himself, it was his moral duty to help others.

“As a husband, he was one in a million. I was very lucky to be in love with someone for 50 years.

“It was devastating to lose him to such a cruel illness.”