From the Uttoxeter Advertiser, 4 April 2012 (story by Katie Bowler).
A TEENAGER who battled with a complex health condition for almost her whole life has died suddenly aged 18, an inquest has heard.
Victoria Webster, of Martins Lane, Hanbury, suffered with a condition called Myalgic Encephalopathy (ME) since she was a year old, although she was only officially diagnosed with the condition in 2008, aged 14.
An inquest, held at Burton Town Hall last week, heard how over the years Victoria and her family faced significant problems with the authorities and agencies because of the difficulties of diagnosing ME and a misunderstanding of the condition.
Victoria had a very severe form of ME which made her hypersensitive to light and noise, to the point where she was bedbound and had to have her bedroom completely blacked out and the windows sound-proofed. She also suffered with dietary intolerances and had trouble controlling her body temperature.
Her body would often feel extremely painful to the extent she couldn’t be touched or brush her hair.
In September, Victoria, who missed the vast majority of her school life because of the condition, had a cordial drink which led her to have a severe reaction and her whole body swelled up. It took sometime for her to recover from the reaction, however, she appeared to be making good progress.
Her mother, Kay Webster, who described Victoria as ‘bright and intelligent’, told the hearing: “The night before her death I stayed in her room to keep a check on her because she was having severe pain in her back and eyes, but in the early hours of the morning on September 22, she started developing breathing difficulties so I called for an ambulance.” On arrival, medics found Victoria suffering cardiac arrest and she was pronounced dead shortly after at 5.16am.
Victoria’s death was said to have come as a ‘massive shock’ to the whole family.
Mrs Webster added: “The day before she seemed as well as she could be. We had no idea this was going to happen. She’d had a setback with the cordial drink a while before, but she was recovering and we thought she was doing better than she had been for some time. Her death was a massive shock.” Police were called to investigate the circumstances of the death and it was concluded that there were no suspicious circumstances.
South Staffordshire Coroner Andrew Haigh offered his sincere sympathies to the Webster family when recording his verdict of a natural death with complications of ME.
He said: “Although we can’t be clear on what the exact complications of ME were at the time of her death, it is very apparent that this was the likely cause.
“She suffered with ME her whole life and the effect was subject to significant variation. This is a very tragic case and I offer my deepest condolences to the family.”
Mary-Jane Willows, of the Association of Young People with ME, supported the family throughout Victoria’s condition.
In a statement released after the inquest, she said: “The death of any young person is tragic and our thoughts are with Victoria’s parents at this very difficult time.
“An unexplained death is even more difficult to deal with and, although Victoria had ME, this was totally unexpected and a shock to her parents and many friends.”
“South Staffordshire Coroner Andrew Haigh offered his sincere sympathies to the Webster family when recording his verdict of a natural death with complications of ME.
“Although we can’t be clear on what the exact complications of ME were at the time of her death, it is very apparent that this was the likely cause.”
How is that an adequate response? What is really recorded on her death certificate. There is no way in a million years the poor girl died of a natural death.
It is absolutely disgusting that while we live in one of the richest countries in the world, we allow people to suffer and die like this.
It is an outrage – any other child/young person or even adult suffering from an illness like this is considered to be brave and is admired for their courage. A young M.E./C.F.S. patient will not only have no hope of a medical treatment but will have to face ridicule, bullying from professionals and judgement by ignorant (though often otherwise well educated) people.
Sadly, Victoria is now gone and she and her family have suffered. We can only hope that as coroners start to use the term M.E. on death certificates it will make health and other professional stop and think about the possible consequences of their own behaviour and attitudes.
They could of course have performed a full and comprehensive autopsy to find out how the ME killed her. They could do that with all ME “natural” deaths.
Yes JoT, performing a comprehensive autopsy in such cases (including a full characterisation of the pathogens present in the body) is the only way that some good can come out of this kind of tragedy.
Does anyone know what, if anything, was done in this regard?
If no autopsy was done, then surely a yawning gap remains in the knowledge about exactly how this girl died.
There are non so blind as those who do not want to see.