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To the last breath: Stephen Forber was the man who would not say die

January 15, 2002 The Guardian (London) by Emma Brockes
To those in the living room, it sounded as if a banshee was coming down stairs. "A flaming banshee," they said, guiltily, six months later. The family tried to ignore it. They had heard the sound before, the stomping of a teenage temper tantrum, except it wasn't made by a teenager and there was a clenched quality to the rage that defied analogy. Then it stopped. An uneasy silence followed, then an angry footfall on the stairs and Rachel Forber, 20 years old, recently discharged from the army, stuck her head round the door. She looked at the television. She looked at her father. "Will you shut the fuck up?" she said. She screamed it. "Will you shut the fuck up?" Stephen Forber's jaw dropped. This was his sentimental daughter, the girl he sang Gene Pitney to and made cry with his karaoke rendition of Old Shep. She had a gob on her, he knew. Much later, he would look back and wonder if her bolshie character had played a part in what happened. But in May last year all he could see was a young woman transported by fury. Forber groped for an appropriate response, and in a last-ditch effort, opted for outrage. "Pack your bags, young lady," he said and told her to go to her mother's, his ex-wife Jayne's. By the time she left the next morning, she had punched her 10-year-old sister in the face. The lie that Rachel was suffering from a case of bad manners had expired. In fact, she was entering the last six months of her life.

It is a different Stephen Forber you meet today, he says, than the one he was back then. Looking at old photos, he rubs the crown of his head and muses ruefully about the onset of baldness. When he wasn't driving trucks and bringing up his children, Forber was a comedian on the club circuit. He has dramatic looks of a sort that stand out on stage. "I'm 42, and I've never dyed my hair," he says proudly. But his reflection makes him shudder. "I look like a panda bear. Too many nights on the internet."

Forber's time on the internet is becoming the stuff of medical legend. When Rachel was diagnosed with variant CJD and given a year to live, he applied himself to the public domain in search of a cure. He is not, by his own admission, an educated man. None the less, while his daughter lost her ability to walk, then to talk, then to recognise her family, Forber ploughed through multi-volume tracts printed out from the internet. His brain swam with "prions" and "Quinacrine" and "Kayser Fleischer rings". If he had to read a research paper 100 times to understand it, he did. Before doctors had finished testing her, Forber had eliminated Huntington's, Wilson's and Parkinson's diseases as possibilities. That left Creutzfeldt-Jakob disease, from which there was no remission. Or rather, from which there was no precedent of remission. Forber was convinced he could save his daughter. How close he came to doing it has become one of the most hotly debated issues in neuro-science.

Rachel Forber was a good-time girl. "She'd torment you, Rachel," says her father. "She was that jokey." She and her best mate Gill met when they were eight and Rachel saved her from bullies in the playground. "She had a word with them," says Gill.

"Knowing Rachel, she probably stuck one on them," says her father. The two girls loved going out. When they were teenagers, they went to Chasers night club in Warrington on a Saturday night. They pronounced it Chass eurs , like the French, which made them laugh no end because it was a bit of a dive andas far from Paris as their imaginations could stretch to. After leaving school and the odd temping job, Rachel decided on a career in the army. She had just passed basic training when depression, a primary symptom of CJD, forced her to quit.

When Stephen Forber remembers his daughter, it is with a crushing ambivalence. He was proud of her assertiveness - her grit and vivacity. But at night, when the sleeping pills wear off and he sits at his computer downloading opaque chunks of neuro-science, he can't help brooding on her boldness. "Our Rachel was the head of the gang," he says, "the pushy one, the leader. You can imagine her in the queue for the school canteen. You can imagine her pushing in. And you can't help thinking, was it the infected burger she ate when she pushed in? Was it the meal that was heading for somebody else's plate? Was it a school dinner? Was it a McDonald's? Maybe Gill was with her the day she got it. Maybe I was." These are the thoughts that occupy Stephen Forber at 3am.

They flew to America on July 4. Through his research, Forber had identified Dr Stanley Prusiner, Nobel prize-winning scientist from the University of California in San Francisco, as the man who could save his daughter. It was Prusiner who discovered the root cause of CJD in the shape of the prion, an infectious agent which attacks the body's brain tissue. Forber called him cold. Prusiner's secretary was sympathetic, but reluctant to help. It contravened protocol. Forber kept ringing and, eventually, one of Prusiner's colleagues, Dr Bruce Miller, admitted that they were working on a drug which, in the laboratory at least, appeared to have had some success in assuaging the disease. If they could get it past the US Federal Drug Agency, he was willing to test the unlicensed drug on Rachel. Quinacrine came in a bright orange tablet, to be taken three times a day. With a thumbs up in the form of a compassionate ruling from the White House, it was, for a few weeks, to restore to Rachel a fraction of the woman she had been. Her subsequent decline would be almost unbearable.

The family flew out last year with a daughter they hardly recognised. She didn't know where she was. Her speech was slurred. Those who saw her off at the airport did not expect to see her again. Within six days of being given Quinacrine, she had turned yellow - a side-effect that won her the nickname Lemon Princess - but was noticeably more alert. Within another week, she was able to cut her own food and move more easily. Her speech seemed to be clarifying. She was even able to play a practical joke on her father, ringing the emergency cord in her room and, to his mortification, trying to order a pizza from the response nurse.

"Rachel has been cured of this," he told the press. "I have no doubt." She appeared on Tonight with Trevor MacDonald, feeding a baby shark at an aquarium and looking relaxed and happy. She had champagne and a five-star trip to New York courtesy of a US TV station which was filming what, in some quarters, was being labelled as a miracle cure. The doctors remained cautious, but declared themselves "delighted" with her progress.

There was only one sour note on the trip - an exchange Forber had in the hospital's relatives' room. "Everyone was talking about what their sons and daughters were in for. They asked me and I said Rachel had Creutzfeldt-Jakob disease. They were like, 'Hey man, what's that ?' I said, it's from Britain, they call it mad cow disease. And they said, 'Oh that! With the cows! Yuk!' and pulled faces. It was an insult. She wasn't a mad cow. I wish people were educated enough to stop calling it that." None the less, with a stock of pills and a swell of optimism, the family returned to England for what they hoped would be a recuperation period culminating in her 21st birthday in November.

If there is one thing Forber blames himself for, it is the promises he made. "She used to say, 'I'm dying.' And I'd say, 'You're not dying. I'm not going to let you.' She'd say, 'Just look at me.' I'd say, 'I promise you. You're getting better. Do I tell lies?' She'd think about it for a moment and say, 'No.' Then I'd say, 'You're going to live,' and she nodded. I'll always feel guilty that I let her down."

Within a few weeks of returning, it became clear that Rachel's liver could not withstand the toxicity of the drugs she was taking. They would have to take her off Quinacrine or she would die of organ failure. Doctors told the family that it would take roughly four weeks for her system to expel the last of the medicine. After that, it was anybody's guess what would happen.

In the event, it all went down very quickly. Almost four weeks to the day, Rachel had a sudden relapse. She was confused and bedridden. The 21st birthday cake her family had ordered was put in a cupboard. On November 28, her birthday, she was brought home to die. Her breathing was shallow. She was given morphine and not expected to survive the night. "They said in the papers that she died peacefully," says Forber. "But she didn't die peacefully, did she Gill?"

"Did she heck."

"I lay on one side of the bed and Jayne lay on the other. Rachel was shallow breathing. She's a strong girl, you know. The doctor went off shift and didn't expect to see her again. He couldn't believe it when he came in the next day and she was still there. He said, 'She's holding on.' She'd take a painful breath and it would stop and everyone would say this is the last one. And it wasn't. For three days and three nights it went on like that - inhale, pause, exhale. I said to Jayne, 'You know what? I could get this pillow and put it over her face.' Now we all believe in euthanasia."

Rachel died at 3pm on December 1. Forber was dozing. Semi-conscious, he sensed a sudden movement, a shift in the air molecules. "She's going!" he said and leant 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." For the funeral, Forber hired a horse-drawn carriage, white doves and a piper. "Even Princess Di didn't have a piper," he says.

Since then, he has redoubled his efforts on the internet, keeping track of Prusiner's advances in how to prescribe Quinacrine and spare the liver. "Rachel was a pioneer," Prusiner wrote to the family afterwards. "We feel terrible that we could not have done more for her." But trying to cure his daughter was only phase one of Forber's quest. Phase two, he says, is lobbying for better CJD research in Britain and punishing those responsible in the ministry of agriculture. He does not want an apology. He wants the guilty parties to stand by his daughter's grave and apologise to her.

Rachel's family do not regret taking her to San Francisco. Whether Quinacrine ultimately succeeds as a cure or not, the insights gained from Rachel's brain scans animate the cliche that her life had importance; something good came from it. She was, as Dr Prusiner said, a pioneer.

Stephen Forber is busy with three other children and his ongoing quest. He is periodically ambushed by visions of Rachel: in a despairing moment, he went in search of Warrington's spiritualist church. After pitching up at the wrong one and enduring half a carol concert, he climbed the hill and caught the last 10 minutes. People were waving their arms and groaning. " 'Is there a Nora here?' said the pastor. 'There's someone coming through for Nora. The spirit is very strong.' " Forber burst out laughing, instantly fortified. "Rachel would have love it," he said.


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