Less than a month after receiving the devastating news that her fit, bright and charismatic husband had an obscure and fatal brain disorder, Tracey Osbourne watched him die the cruellest of deaths.
55-year-old Phil Osborne, a respected and pioneering metrologist for Lubrizol, was diagnosed with Sporadic Creutzfeldt-Jakob Disease, so rare there’s just a one-in-a-million chance of getting it.
He had symptoms for less than three months before his diagnosis and died just 16 days after doctors discovered the reason for his sudden and steady decline.
Phil, like many patients subsequently diagnosed with CJD, suffered with unanswered questions, fears that his condition was contagious or genetic and frightening symptoms that progressed astonishingly quickly - including memory loss, dizziness, hallucinations and sudden jerking movements.
Mercifully, by the time doctors diagnosed the deadly condition, Phil was unaware of his situation but his family, including 26-year-old daughter Adele and son Jamie, 23, were left devastated.
Tracey, of Ripley, said: “We’d already lost Phil by the time that he was diagnosed. He was still alive, but the essence of Phil had gone. And from that point on we lost him a little bit more each day, he just deteriorated in front of our very eyes as his brain shut down more and more.
“It robbed him of his identity, his memory and just left nothing in return. It was like there was a horrendous hole in his brain and the CJD just took over. The speed of it was shocking.
“By the end, he could no longer speak, focus, eat or stand and he also lost his ability to swallow.
“I’d heard of CJD, but only through the beef crisis, and I didn’t know there were different versions. Phil was larger than life, healthy and fit, and we had such a good life. We are completely and utterly heartbroken.”
Phil, who had worked at Lubrizol as a Rater and Metrologist in Hazelwood for 30 years, began feeling dizzy and generally unwell in October after returning from a holiday in Greece with Tracey.
At first doctors in the Royal Derby Hospital thought he had a middle ear infection, but when he started experiencing a racing heart doctors thought his condition might be related to a vitamin deficiency.
He was hooked up to a heart monitor and sent for a brain scan, but every test proved inconclusive.
Tracey said: “At one point he thought he might have a brain tumour and he was scared, really frightened. He knew something wasn’t right and at one point he said he was scared he’d forget who I was.
“To my shame, I dismissed him and told him not to be daft. But, of course, he did forget who we were. By December 25th he didn’t even know it was Christmas Day.”
A diagnosis eventually came on January 5th but just 16 days later Phil died, with his distressed family by his side.
Sporadic CJD, as its name suggests, occurs spontaneously without warning or symptoms and represents about 85 per cent of CJD cases.
The disease, which claims the lives of about 60 people in the UK every year, has some high-profile relatives including Variant CJD which is caused after consuming meat from a cow infected with BSE.
Despite strides in research, CJD is still an enigma. Doctors have no way to test for it, often aren’t able to diagnose it until days before death, and nobody knows how it’s contracted.
In all cases, normal proteins, known as prions, mutate into shapes that then attack cells in the cerebellum, the part of the brain that controls movement.
There is another form of the disease, Familial CJD, and Adele and Jamie are waiting for the results of blood tests to rule out whether their dad had the genetic form of the condition.
Tracey added: “Doctors think it is unlikely that Phil had the familial version of CJD, but we have requested the blood test to be absolutely sure. The specialists did say that even though there is no history of the disease in the family, it has to start somewhere.
“The blood has been sent to a specialist centre in London, but unfortunately it takes 10-12 weeks for the results to come back, so we are still waiting.”
Phil’s funeral was held at Amber Valley Memorial Park where colleagues from Lubrizol were invited to be his pallbearers, alongside Jamie and Tracey’s brothers.
The company is planning a permanent memorial to their highly-respected colleague in the grounds of their Hazelwood head office and donated in excess of £1200 to both the Nightingale Macmillan Unit in Derby and the CJD Support Network in his memory.
Colleague Alan Hunt said: “Phil was a brilliant raconteur and could hold a table of friends spellbound until the punchline reduced them to tears.
“His dry, witty humour carried over into his working relationships and everyone had an experience or story to recall their time spent working and travelling with Phil. He made coming to work fun.
“Phil was a very valued and influential part of the rating team which required a great amount of dedication to the task in hand and an unprecedented level of consistency to provide industry approved, meaningful results.
“Phil will be greatly missed by all who knew him and he will live on in our thoughts forever.”
Tracey, Adele and Jamie are now determined to raise awareness of CJD in the hope that symptoms are more easily recognised by medical professionals and relatives of sufferers.
“Someone in the CJD support unit said to me that if you go out of your front door it would take only a few seconds to come across someone who has had cancer, or knows someone who has had cancer. Everyone has some experience of it,” said Tracey.
“That’s one of the sad things about CJD – we are completely alone because it’s such a rare disease – only one person in a million will get it.
“Phil was my one in a million though and we how have to learn to live without him.”