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From: TSS (
Subject: A daughter's death and a father's story
Date: January 24, 2005 at 5:16 pm PST

-------- Original Message --------
Subject: A daughter's death and a father's story
Date: Mon, 24 Jan 2005 08:39:31 -0600
From: "Terry S. Singeltary Sr."
Reply-To: Bovine Spongiform Encephalopathy

##################### Bovine Spongiform Encephalopathy #####################

A daughter's death and a father's story

The story of one of the most high profile deaths from nvCJD is being
brought to the
stage for the first time. Arts reporter Nick Ahad looks at the story
behind the play.
Stephen Forber seems strangely detached from his daughter's death. He
speaks about it as though it were a story that happened to someone else.
It is clear it's a mechanism to help to cope with the appalling events
that befell him and his family following the diagnosis of his daughter
Rachel with nvCJD (new variant Creutzfeld Jakobs Disease) in May 2001.
"If you think it might be a painful question, just say 'Stephen, this
might be difficult', otherwise, ask what you want.
"There are certain things I can't talk about... the final minutes on the
day she went," he says, before trailing off and shifting the talk to the
12 months prior to Rachel's death.
But it was a previous interview in which he did describe those final
moments when 21-year-old Rachel took her last breath, at 3pm on December
1, 2001, that inspired theatre director Ruth Carney to get in contact.
The article in the Guardian in 2002 said: "Forber was dozing.
Semi-conscious, he sensed a sudden movement, a shift in the air. 'She's
going!' he said and lent to whisper in her ear. 'Rachel sweetheart, I
love you, goodnight, God bless, let yourself go now, I'll always love
you, until the day I die.' And she was gone."
Allowed unparalleled access to Stephen and his family, Carney spent much
time with them, talking about Rachel and, along with writer Rachael
McGill, created the play The Lemon Princess, which has its world
premiere at West Yorkshire Playhouse on February 4.
"We had film companies talking about making a television movie and
talking about all kinds of money," says Stephen.
"But Ruth was the only one who didn't seem interested in telling the
story for the money involved. Her attitude was that she was very
anti-Government and was angry about the lies they had told during the
whole crisis and I thought she would tell the story the way that it
needed to be told."
The nightmare that became a reality for Stephen and his family began in
May 2001 when Rachel, who was then a healthy 20-year-old, recently
discharged from the army, was diagnosed with nvCJD, the human form of
BSE, also known as Mad Cow Disease.
The prognosis was not good, but Stephen refused to believe that his
daughter, a strong young woman, full of life and verve, could not beat
the disease.
"The Government tells you that there is no cure, but when it happened to
our Rachel I just kept saying, 'There's a cure, there's a cure'. There
was no way anyone was going to tell me that my daughter was going to
die. Even up to a couple of days before she went I believed she was
going to get better," says Stephen.
This determination, this drive, kept Rachel's father, at the time a HGV
driver, awake all night, every night, searching the internet for
information. He read medical sources up to a hundred times over, willing
himself to understand the complicated jargon, and astounded doctors with
his encyclopaedic knowledge of the disease.
Through his research he identified Nobel Prize winning American
scientist Dr Stanley Prusiner as a possible saviour and, by raising
money through charity events was able to fly his daughter to San
Francisco where she became a human guinea pig for a possible cure, the
unlicensed drug Quinacrine.
One side-effect of the drugs was to turn Rachel a shade of yellow and
her father, displaying a sense of humour even in the bleakest of times,
nicknamed her The Lemon Princess – the title of the play inspired by her
For a short while, Rachel's condition improved – but the toxicity of the
drug meant she had to stop taking it. She died four weeks later, two
days after her 21st birthday.
Dr Stephen Dealler, a Leeds doctor who worked with Prof Richard Lacey,
the man who first warned about the human form of BSE, said Rachel's case
was "absolutely vital" in understanding and exploring a way of fighting
the disease.
Stephen says he is "very pleased" that his daughter's story is to be
told on stage.
"We had a fantastic relationship, her mother left when Rachel and her
sister were young, so I brought them up. I have a tattoo on my back with
her name on it. She was so close to me and the disease took her away,"
says Stephen.
"When people talk about nvCJD, it's like it's a dirty word or something.
This play is going to help make it less of a stigmatised disease, people
can talk about it and it's not something to ashamed of."
For Ruth Carney the story began three years ago, when she first read the
interview with Stephen.
"I was just so moved by the story,"she says.
"I started researching the whole issue and I could not believe the
extent of the cover-up by the Government."
After making contact with Stephen and his family, Carney built up a
relationship and trust and Stephen allowed her access to diaries he had
kept when Rachel was ill with the disease.
"Speaking to and getting to know Stephen was amazing, he is an
incredible man and so passionate," she says.
"It was also so clear just how much he loved his daughter."
For Carney, The Lemon Princess is as much about the story of the love
between a father and a daughter as it is about exploding the whole
contentious political issue of the management of the CJD crisis.
"I care about the play and the story on a personal level," says Carney.
"But I'm also aware that we are going to be kicking up a real hornets'
nest and I'm glad about that. I hope the story inspires people,
stimulates debate, and makes them ask questions about what happened."

The Lemon Princess opens at West Yorkshire Playhouse, Leeds, on February
4 and runs until March 5. For tickets ring 0113 213 7700.

The Playhouse is running a series of events alongside The Lemon Princess:
The Real Story of Mad Cow Disease; February 19, 12pm: Artists,
scientists and families of those who have suffered from nvCJD discuss
relevant issues.
Cafe Scientifique; February 26, 5pm: A relaxed, informal opportunity to
learn about nvCJD and BSE from a leading scientist.
Action: Reaction; March 2, 3pm: An artistic presentation by MA
choreographers from Bretton Hall and the Playhouse Young Ambassadors
which uses newspaper articles, interviews and reports to create a fusion
of theatre and modern dance.


Dr Stephen Dealler is the man who worked alongside Prof Richard Lacey as
a registrar at Leeds General Infirmary. It was Prof Lacey who first
warned that BSE could jump the food chain from cattle to human.
He, along with Prof Lacey, was denounced by the Government when they
voiced their fears about nvCJD.
Today we know their warnings should have been heeded, yet when he speaks
about the whole sorry affair, Dr Dealler, now a consultant medical
microbiologist at Lancaster Royal Infirmary, simply lists the facts.
"We (researchers) were told that basically if anyone stepped out of
line, they would be made unemployed," says Dealler, who has acted as
medical adviser on The Lemon Princess.
"I was Lacey's underling and he told me to start looking at this
disease. Other researchers carrying out work were told they should say
nothing. He was the only one that decided to speak out, it was like it
was Lacey versus the world.
"The Government discredited him and by association me and the work we
were doing together, although the BSE inquiry report in 2001 showed that
he was right."
Dr Dealler began researching BSE and nvCJD in 1987 and Prof Lacey began
to warn about it in the late '80s. The research which showed a major
source of the country's food supplies may be contaminated caused the
then Conservative government to panic and in 1990 press statements were
issued assuring the safety of beef.
"Stephen Forber found me when he
was researching the disease after his daughter contracted it," says
Dealler, who tracked Rachel Forber's case from the start.
"When someone tells you that your daughter's going to die, but there is
a chance that something might work you are willing to try anything.
"This particular case (Rachel's) was desperately important in the
research that has been carried out since.
"I think the play shows really well the story of this young woman and
what happened during the whole affair."

24 January 2005


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