IT was the food crisis of the nineties and, like every other mum, Kate Madden had watched the BSE crisis unfold with horror.
Images of cows staggering from pen to pen, government ministers feeding burgers to their children while insisting all was fine and scientists predicting a nightmare faced by patients and families affected by its human form.
Variant CJD – a brain c
ondition linked to eating infected meat – was the biggest health scare in a decade.
Mums like Kate, with two hungry boys to feed, couldn't help but wonder what exactly was going into their favourite foods.
A decade on and BSE was supposed to have been dealt with, as nightmare scenarios of hundreds falling victim to 'human form' vCJD didn't appear to have come true. Burgers, sausages and meat pies were back on the menu.
So how then – and why – was Kate's strapping son now dying from it?
"He was 6ft 1ins tall, he weighed 15 stone, he was going into the Army," says Kate, eyes flashing with hurt, anger and bitterness from behind her auburn fringe as she tells how she watched her son's horrific death.
"He'd been accepted to do his basic training," she proudly adds. "He was fit, healthy. He didn't smoke, he hardly drank.
"Why was this happening to him?"
Kate clutches a handful of photographs of Alan which reveal a strong young man with an open smile. Some show him in playful mood, arms wrapped round relatives and friends, one has him posing proudly in his blue Air Cadet uniform, a snapshot of the military man he wanted to be and which, tragically, would eventually appear on the front of his funeral order of service.
Then come the snaps of 20-year-old Alan taken just a few weeks after he was finally diagnosed as a one-in-a-million bad luck case, one of Britain's small but disturbing number of vCJD victims.
They show his muscular body already wasting away – he'd eventually weigh less than eight stones – the wide grin replaced by a blank expression.
Later he's pictured in a wheelchair and lying in a hospital bed with padded sides to stop him smacking his face against the metal frame as his body was wracked by uncontrollable jerks. He's blind and he's mute, he's lost control of his bodily functions and he's dying.
Kate is pictured with him, face ghostly white and her sunken eyes pleading, arms wrapped around her son who, in just four hellish months, had deteriorated in front of her and who would soon die in her arms.
"He died in a truly horrific way," she says in a whisper. "I work in healthcare, I've seen people die and some go peacefully and quietly.
"Alan didn't. When he died his face was pinched into this horrific expression. He was yellow – his liver and kidneys had stopped working.
"He didn't look to me like he was at peace."
She's speaking out about her son's death last June in the run-up to National CJD Day on 12 November, an event aimed at reminding healthcare professionals and the public that the legacy of the nineties' BSE crisis is with us today, as well as highlighting the plight of families affected by various forms of Creutzfeldt-Jakob disease (CJD).
For like most of us she thought the nightmare headlines of hundreds of people dying as the result of eating infected meat would never affect her family and that vCJD was last decade's problem.
"It's not something you ever think is going to happen," says Kate, 47, originally from Wales but who has lived with partner Jim Watson, 45, in Loanhead for two years. "You end up with so many questions. I couldn't understand why one of my sons had it but the other didn't. What was it that meant Alan had this?"
His brother, Richard, 28, raised the alarm after collecting Alan for a family funeral. "He looked like a tramp," explains Kate. "Richard thought he was having a breakdown.
"On the way home Alan was holding his hand over his eye the whole time. Richard phoned me and I wondered if he might have had a stroke."
In fact, her son's condition was linked to the horrors of the BSE "mad cow" crisis and he'd been incubating his illness for around ten years.
But so unusual is the condition – in the 13 years since the first vCJD cases there have been 165 deaths – that medical staff were also caught out. It took two painful weeks to diagnose what was happening and even then, Kate says that it seemed as if no-one really knew how to care for Alan.
She was told his condition would take around a year to progress. In fact he deteriorated at a rapid pace as his brain turned sponge-like and he was robbed of the ability to carry out the most basic functions.
To add to her distress, Kate was quizzed by a researcher from UK Creutzfeldt-Jakob Disease Surveillance Unit based in Edinburgh, who wanted to know what kind of food her son had eaten as a child, raising dreadful feelings of guilt and fear.
"Families affected by vCJD feel incredible guilt, they feel they have failed their youngsters and they can't understand why it has happened to them," explains Gill Turner of the CJD Support Network.
"They are tormented. They remember how they all shared the same food. When you think you are giving someone a good meal and then this happens . . . it's tragic."
Kate was with Alan in Wales when he died last June – the sole victim of vCJD in 2008.
"There had been talk for weeks about getting him out of hospital and into a flat. He was in it for just eight days when he died," she remembers.
"He was in a terrible state. I crawled into bed beside him and cuddled him. There was nothing anyone could do – this disease rips people to bits, you can't stop it, you can't make them better and you can't take it away."
Today her most precious reminder of her son is a poignant text message he sent her – one of the last he ever sent – during an amazingly lucid moment just after Mother's Day in March last year.
"Could you come and see me please?" it reads. "I want to see my cats, I want to go and live and to do stuff.
"I love you."
For information about all forms of CJD, go to the CJD Support Network on www.cjdsupport.net or call 01630-673 973
ANYONE OVER NINE COULD BE CARRYING MAD COW DISEASEIT'S nearly 20 years since the first recorded death from vCJD made headlines around the world and sparked a food industry crisis.
A national scandal followed as it emerged that herbivore livestock had been fed food made from the offal, bones and spinal cord of BSE infected animals – passing the infection into the food chain and resulting in a human form of "mad cow disease".
Children were identified as being most at risk from eating infected products – and as the disease takes years to incubate it's feared that many cases are still waiting to emerge.
According to Gill Turner of the CJD Support Network: "Everyone who lived in Britain who is over the age of nine is at risk of CJD through their diet. That is an awful lot of people potentially carrying the infection.
"A big issue is secondary transmission – there is no blood test available that can identify CJD, which means there is a risk of passing the disease on to someone via blood products."
Variant CJD is one of four strains of Creutzfeld-Jakob disease. One occurs naturally and affects people over 50, while another is a genetic condition that is inherited. The last emerges when a patient is exposed during medical treatment.
The various kinds of CJD have led to 1432 deaths since 1990, 165 of the vCJD.
