Lancashire teenager Zoe Jeffries became Britain’s youngest CJD victim when she died at the age of 14 from the strain of the disease linked to infected beef.
Today, as part of our series looking at the hidden tragedy of CJD, Investigative Reporter AASMA DAY talks to Zoe’s heartbroken mum Helen Jeffries about her pain and anger at losing her daughter in such a cruel way.
WITH a face etched with pain, Helen Jeffries is a woman who has borne more tragedies than anyone should experience in a lifetime.
The grief she has endured has clearly taken its toll as Helen, 54 walks with a stumble. She had a stroke a few months ago and believes grief and suffering was a factor.
Helen had six children but lost two. Baby Rochelle died at seven months and her eldest child Zoe, 14, died slowly and painfully from variant Creutzfeldt Jakob Disease (vCJD), the human form of Mad Cow Disease.
Just months before Zoe first began displaying unusual behaviour, Helen was widowed when her husband of 18 years suddenly died of a heart attack aged just 38.
Helen says: “I’ve definitely had my fair share of tragedies. It seems really cruel and unfair that two of my children were taken from me.
“I lost my third child Rochelle when she was seven-and-a-half months old. She was very premature and only weighed 1lb 10oz at birth.
“Rochelle was very poorly and had a lot of problems and only spent one week out of hospital. She died of septicaemia.
“My husband Derek, who I was with for 20 years, died suddenly at the age of 38.
“He got up for work, told me he had a pain in his chest, then just collapsed and died of a heart attack.
“After going through the pain of losing a child once then losing my husband, you don’t expect it to happen again.”
Helen, of Wigan, says the death of her husband clouded Zoe’s diagnosis as when she began behaving out of character, doctors assumed it was a delayed reaction to her father’s death.
Zoe, who was always healthy, active and sporty, first started acting differently at the age of 12 in 1998 a few months after her dad’s death.
Helen recalls: “It was as though Zoe got up one morning and was a completely different child.
“She had always been full of energy and active but suddenly didn’t want to do anything and wouldn’t get up off the couch. It wasn’t normal for any 12-year-old and certainly not for Zoe.
“Zoe was sporty and did gymnastics and cross country and had won lots of medals for Morris Dancing.
“She was behaving completely out of character. She kept crying and screaming all the time and refused to leave the house. But it was put down to the grief of losing her dad.”
Zoe was thought to have depression and prescribed anti-depressants.
But Helen says: “I knew there was something else wrong with Zoe long before doctors and psychiatrists. You know your own child.”
By the end of that year, Zoe was struggling with her mobility and losing her balance.
Helen remembers: “Zoe was holding her arms out and dragging one foot and had to make an effort to keep her balance.
“Even at this stage, doctors still put it down to depression. It took almost 12 months before Zoe was diagnosed.
“She was under a psychiatrist and eventually took her for a brain scan.
“They initially told me the scan was clear, but a few days later, they called to say they had looked at it again and spotted something tiny.
“Zoe was sat outside the room when they told me. I had a feeling they were going to say it was CJD as I had seen about it on the news and it seemed to fit.
“But it still hit me like a ton of bricks. I was full of disbelief.”
Helen says it took until April 1999 for specialists to officially diagnose Zoe with vCJD.
Later, a post mortem confirmed Zoe definitely had the variant form linked to consuming meat from a cow with a similar disease called Bovine Spongiform Encephalopathy (BSE) - commonly know as “Mad Cow Disease”.
Helen describes her whirlwind of emotions - including guilt for feeding Zoe whatever caused the disease.
She explains: “We ate meat, but not extreme amounts of it. I’ve never been one for junk food and couldn’t stand burgers myself so never touched them.
“But Zoe loved them. However, she didn’t eat them any more often than most people.
“She didn’t go to McDonalds or anywhere like that. She ate normal stuff and only had beef in burgers and Shepherd’s Pie.
“Apart from that, we probably ate less beef than most people because it was expensive and couldn’t afford it.
“Afterwards, I felt incredibly guilty for buying cheap burgers for Zoe.
“But even if I’d fed her top quality beef, I would still feel guilty because as her mum, I put the food in her mouth.
“I suspect she ate whatever it was that gave her vCJD when she was a baby.”
It took two-and-a-half years from her first symptoms until Zoe’s death.
Helen says: “It is indescribable to explain what it was like seeing her change so much. It was a horrible, slow death. When it is your child, you feel totally helpless.
“By the end, Zoe was like a cabbage. She didn’t deserve that. She was unable to walk and was constantly jerking around. In the end, she lost her eyesight.
“It is terrible as because there’s no cure, it’s as if you’re waiting for death.”
Zoe died on October 28, 2000 - two weeks before her 15th birthday.
Helen allowed television cameras to film Zoe and harrowing images were shown of the teenager lying almost motionless in bed.
Helen explains: “I wanted people to know what was happening and see what this disease had done to my daughter.
“I wanted to show the human face of variant CJD and what it was doing to families.”
However, Helen confesses: “Zoe’s death was televised, but I’ve still not been able to bring myself to watch it.”
Helen gave an alternative Christmas Day message on Channel 4 talking about her daughter’s death from the human form of Mad Cow Disease.
She admits she found this very difficult. “I felt like part of me had died.
“I found it very difficult talking about Zoe. Even now, certain things set me off and I suddenly burst into tears.
“Zoe was obsessed with the film Titanic and watched it hundreds of times. She liked Leonardo DeCaprio. At one point, I sobbed every time I heard a song from Titanic.”
This November would have been Zoe’s 30th birthday.
Helen says: “All Zoe’s birthdays are difficult but her 30th will be extra hard.
“I think about Zoe every day and have kept pretty much everything belonging to her. I have decided it is time to have a huge clear out of the house.
“But I’ll still never throw anything of Zoe’s away.”
Helen reveals she has not touched meat since the day of Zoe’s diagnosis and is completely vegetarian, as are two of her children.
She says: “Even the smell of meat knocks me sick and I could not bear to eat it as I don’t trust it.
“I eat Quorn and vegetables and won’t touch anything without the vegetarian sign.
“My children didn’t eat meat while they lived at home and two of them still choose not to eat it.
“My youngest daughter Autumn is nine and has never eaten meat.
“I have told her it is her choice, but she has chosen not to eat it.
“Autumn never knew Zoe, but talks about her and asks questions. My other children remember her.”
Helen still harbours a lot of anger about Zoe’s death and believes the Government knew about the disease a lot earlier than they publicised it.
She says: “I felt the Government were hiding things from the public and pretending it wasn’t happening.
“It came out too late, I feel they only admitted it years later.
“If it had come out earlier, I would’ve stopped giving my children beef.
“If I’d known at the time, I feel Zoe might still be here.
“I think people think CJD has gone away. They need reminding about what happened.
“For the families who lost someone to the disease, the pain is everlasting.
“I’m sure this hasn’t gone away. It wouldn’t surprise me at all if CJD hit the headlines again in a few years.
“I am convinced CJD will make a comeback.
“At the time, I said I felt Zoe had been murdered and I still feel this.”