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Man with Lou Gehrig's makes extraordinary offer of his organs

By the CNN Wire Staff
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ALS patient: 'Wish to do good thing'
STORY HIGHLIGHTS
  • Garry Phebus says he's under a "death sentence"
  • "There's nothing greater than for a family member to receive an organ"
  • Doctor: Physicians are unlikely to go along with the Georgia man's plan
  • Some ALS sufferers live for decades with the disease

Atlanta, Georgia (CNN) -- A Georgia man suffering from Lou Gehrig's disease says he wants to die by having his organs harvested rather than wait for his degenerative nerve ailment to kill him.

Garry Phebus has been battling amyotrophic lateral sclerosis, as the disease is formally known, since 2008. The 61-year-old told HLN's "Prime News" on Thursday that the diagnosis is "a death sentence, positively, no questions asked," and he wants do donate his organs while he still can.

"If people have their legs cut off or their wife left them and they commit suicide, it's another story. They still have a life ahead of them. But I do not," he said. And for people waiting for transplants, "There's nothing greater than for a family member to receive an organ so they can watch their family grow up."

Lou Gehrig's disease attacks the nerves in the brain and spinal cord, affecting voluntary muscle control. In its later stages, the disease can leave sufferers paralyzed but fully conscious and alert.

Video: Donate organs while alive?
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Phebus lives in White, Georgia, about 50 miles north of Atlanta. He conceded his decision is "not for everyone," but said his family supports him -- a statement backed up with some qualifications by his daughter, Kerri Wilkinson.

"We kind of said, 'OK, well, let's not do this at this very second,' but to find out more about it," Wilkinson said. But she said that when her father's disease "gets to the point where he's lost his pride or become humiliated in how he's having to suffer and the indignities ... we're not going to have an issue with that."

About 5,600 Americans a year are diagnosed with the disease, according to the ALS Association, a nonprofit group that advocates for more research on the disease. Those diagnosed typically live two to five years. But some, like famed Cambridge University physicist Stephen Hawking, survive for decades.

Phebus' offer is "admirable, and our heart goes out to him," Leigh Vinocur, an emergency medicine physician at the University of Maryland, told HLN. "But 10 percent of people can live 20 years with this disease."

Vinocur said what Phebus wants to do amounts to physician-assisted suicide, a practice legal in only three U.S. states -- Oregon, Washington and Montana. And in those states, patients who seek to end their lives are typically in the last stages of a terminal disease.

"We donate organs in patients that, say, are brain dead or have terminal events," she said. Most doctors "would have a problem" with what Phebus wants to do, because "at this point, he's fairly healthy."

"I can't picture any states essentially putting, right now, a relatively healthy man under anesthesia, taking out vital organs like his heart and taking him off the ventilator," Vinocur said. And ALS is unlikely to harm the organs most likely to be used for transplants unless some sort of related infection strikes them, she said.

Phebus has also taken his appeal online. In a video posted on the website YouTube, he argues that 90,000 people a year die waiting for organ transplants, and compares his situation to a soldier in a foxhole throwing himself on a grenade to save his comrades.

"I am not suicidal," he says. "I just know that it is a matter of time before I die and wish to do a good thing for those people who have a good life expectancy"

 
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