Girl Died Rapidly From Neurological Disorder
When 15-year-old Claire McVey appeared reluctant to eat in front of her family, her mother Annie assumed she was just having teen wobbles about her weight. But Claire was showing the first signs of variant Creutzfeldt-Jakob disease (prion disease) or vCJD – a condition that would leave the bubbly teenager dead within six months. It’s the human form of mad cow disease and an overall prion epidemic that is spreading exponentially.
It was in 1996 that Annie, like all mothers, was horrified to learn that dozens of people had been infected with an incurable degenerative brain condition caught by eating beef from cattle infected with bovine spongiform encephalopathy or BSE (there are other vectors of concern).
“Being vegetarian, I always cooked meat-free dishes at home but my two children would occasionally eat meat elsewhere,” says Annie who lives in Kentisbury Ford in Devon. “When I heard about BSE being passed on to humans I was horrified. I wasn’t going to risk my children’s health so I immediately stopped Claire and her brother from eating all meat. What I didn’t know was that it was already too late.”
It was four years later, in July 1999, that Annie, who worked as a risk manager at their local district hospital, first noticed her daughter had become withdrawn and was behaving oddly.
“She stopped eating in front of us,” she recalls. “At first I thought she might be developing an eating disorder but it was more an anxiety about people seeing her eat. Then she started to have an issue about going to school and she didn’t want to wear her shoes. I couldn’t understand what had got into her.”
Worried, Annie took Claire to see their GP, who diagnosed the teenager with suspected depression. But still feeling uneasy about her daughter’s behavior, she arranged for Claire to see a pediatrician.
“After carrying out a neurological examination he told me that he suspected Claire had a brain tumor,” recalls Annie. “My world just fell apart.”
Claire was immediately admitted to Frenchay Children’s Hospital in Bristol, 100 miles away, for more tests.
“Over the next week she was tested from head to toe,” says Annie. “She had MRI scans, a lumbar puncture, biopsies, neurological testing and seemingly every blood test going but the doctors couldn’t find anything.”
Yet Claire’s health was deteriorating rapidly. She had trouble with her balance, felt very weak and couldn’t walk.
“Eventually, they told me the news I’d dreaded the most,” recalls Annie. “Claire had suspected vCJD. It was like being punched in the stomach. I knew what it meant. Claire was being handed a death sentence.”
Since doctors are not able to confirm a patient had vCJD until a brain biopsy is conducted after their death, there were no more answers.
All Annie could do was take Claire back to the home they shared with Annie’s partner, Wayne, and Claire’s older brother.
“Back home, Claire asked me if she was going to die,” recalls Annie. “All I could say was that I didn’t know. She said she was scared that it would hurt, so I promised Claire that if there was any pain I would make sure it was relieved. She seemed eerily calm, like she’d accepted her fate. I could hardly believe what was happening.”
Over the next four months, Claire grew weaker and weaker, rapidly becoming less and less mobile. She was on medication to ease her anxiety and painkillers for her muscle spasms. She needed help dressing herself and eating and drinking but as she didn’t want to go back to hospital, a place was arranged for Claire at Little Bridge House, a children’s hospice in Fremington near Barnstaple. There, staff doted on Claire and she was able to find peaceful moments, listening to music in their sensory room.
“As time went on she couldn’t move at all,” says Annie. “She began to slur her speech and I wondered if she’d remember me the next day.”
Claire spent Christmas at home, returning to the hospice a few days later. She had been excited about the millennium New Year’s Eve but, fading rapidly, she slept through all the celebrations.
“The next morning she couldn’t believe she’d missed it all,” says Annie. “When the nurse asked what she’d like for breakfast she requested Buck’s Fizz! Then she asked to be lifted into her chair so she could go around and say ‘Happy New Year’ to everyone. I think that was her way of saying goodbye – she died 10 days later on January 11. Her brother and I were sat by her side as Claire slipped away in her sleep.”
Over the following months the pain of losing her daughter took its toll and in November 2000 Annie began to experience problems with her own health. She was diagnosed with post-traumatic stress disorder, depression and chronic fatigue. She developed an autoimmune disorder, which left her weak and immobile. Too weak to get out of bed, Annie felt eaten up by grief.
“I was in a terrible place,” she says. “I was devastated, frustrated and unable to do anything. All I could think about was Claire and what had happened to her. I felt consumed by anger that the government compensation promised was taking so long, not just for me, but for the vCJD families still caring for people. These families were going through the worst time of their lives and finding the process of getting compensation very difficult. I wanted to do something to help but the legal process confused me. I needed to understand it, to make sense of it, so in 2004 I decided to study law through the Open University,” says Claire. “My aim was to support families so they could get a care package and be compensated fairly.”
Wheelchair-bound and still suffering from debilitating fatigue, Annie made it her mission to complete her degree.
During her six years of study with the OU she put her learning into practice, too, regularly fighting tooth and nail for the rights of other vCJD families (prion disease). Although Annie, now 54, did receive a payout in 2006, she was dismayed by the system that compensated families purely on the basis of how well they could express the severity of their suffering. So in 2010, she and other families took their case to the High Court, claiming the compensation scheme was flawed. Although their challenge and a subsequent Court of Appeal action failed, Annie was able to find peace in the fact she had done everything she could.
“The judge said he sympathized with our case but he had to apply legal principles,” she says. “It was disappointing but we kept it in the public eye for a long time. We made our mark.”
Later that year, Annie graduated with a Bachelor of Law honors degree, which she dedicated to Claire’s memory during the ceremony. She now plans to take a masters degree in Medical Ethics.
“I cannot praise the Open University enough,” she says. “It allows people like me, who can’t go to university full time, to study for a degree. The quality of the courses and the support they have given me has been excellent.”
And Annie is still putting her studies to good use.
“There are so many downtrodden people out there because they don’t know where to start with the law,” she says. “I work for a couple of unions, looking at cases, giving them advice, assisting their members and helping them with personal injury claims.
“When you have a law degree in a small town, everyone comes for help. I’m very busy and quite content with that. I can’t think of anything more worthwhile.”
And despite the hardships she has endured, she remains upbeat.
“Losing Claire was the worst moment of my life,” she says. “I’m in a life that doesn’t feel real. I’m waiting for my girl to come back but she won’t. It is a physical pain. But what I went through was nothing compared to Claire.
“I’ve had a good life. I may be incapacitated but whenever I feel sorry for myself she pops into my head. Claire was interested in law and she might well have gone on to study it herself if she’d had the chance. She missed out on so many chances so I’m determined to make the most of mine.”
Crossbow Communications specializes in issue management and public affairs. Alzheimer’s disease, Creutzfeldt-Jakob disease, chronic wasting disease and the prion disease epidemic is an area of special expertise. Please contact Gary Chandler to join our coalition for reform firstname.lastname@example.org.