CHICAGO – Kurt Perry wanted to die.
The thin, pale 26-year-old has suffered from a painful neurological disease since childhood, forcing him to support his wobbly legs with a cane. His stiffly crimped fingers can hardly grasp a book. The terrifying lapses in breathing eventually became too much, pushing him to pick the day he'd kill himself with an assisted suicide network's help.
Now that authorities have effectively shut down the Final Exit Network, Perry said he's found his reason to live.
"I just feel that this is a huge setback for the rights of many to pursue the right to die," the suburban Chicago man told The Associated Press on Tuesday.
"I felt I've got to speak out about this," he said, his soft-spoken speech sometimes halted by gasps.
Perry was to become the youngest person to die with the network's help on Feb. 26, the day after the Georgia-based organization's president and three other members were arrested in Georgia and Maryland following an eight-month investigation there in which an undercover agent posing as a suicide-seeker infiltrated the group.
For now, he has halted his suicide plans, and Perry said he's now a crusader for people's right to die. He, along with network president Ted Goodwin, gave separate interviews to The AP on Tuesday defending the organization.
Perry joined Final Exit a few years ago and said that volunteers have given him support and friendship — and that they did not encourage him to choose suicide. But they would have been present when he did it.
"I didn't want to do it on my own because I feel that since the Final Exit Network has been so supportive of me, giving me encouragement to continue to live as long as I can, that it would be sort of lonely to die on my own," Perry said.
Perry has suffered since childhood with Charcot-Marie-Tooth, or CMT disease, a genetic condition affecting the nerves that control the arms and legs. Perry admits it's rarely life-threatening, but he said he has a severe form that affects the nerves involved in breathing.
He said he dropped out of high school at age 16 after school officials failed to accommodate his condition, and he's been unable to work.
Goodwin told The AP Tuesday that people like Perry have as much right to kill themselves as those near death.
"These people who are terminally ill are blessed in a small way — there's a finite time for their suffering," Goodwin said, the first time since his arrest that he's spoken publicly about the organization he founded in 2004 after his father's 10-year struggle with emphysema.
"But there are many, many people who are doomed to suffer interminably for years. And why should they not receive our support as well?"
The group has drawn criticism from some within the right-to-die movement, including Dr. Jack Kevorkian, who say only doctors should assist terminally ill people in ending their lives.
Some activists for the disabled worry about others wielding too much power over life-and-death issues. Stephen Drake of the group Not Dead Yet said assisted suicide sends the message that certain people are expendable.
"What you've done is you're saying that group of people, their lives have less value," Drake said.
Goodwin said the group has helped guide nearly 200 people to their deaths. He said the network never actively assisted suicide, but instead offered people support in their final hours.
"We believe that it is the right of every mentally competent adult to determine whether he or she is suffering," Goodwin said. "We do not believe this should be left to the physicians, church leaders or politicians."
The arrested group members have been charged by the Georgia Bureau of Investigation with assisted suicide, tampering with evidence and violating racketeering laws in the death of a 58-year-old man, whose doctor said he was cancer-free at the time.
GBI has said network members were instructed to buy two new helium tanks and a hood, known as an "exit bag." In court papers, investigators said the group's guides would hold down its members' hands to prevent them from removing the hood — a charge Goodwin vehemently denied.
"We do not hold hands down. We do not cause them to suffer," he said. "And this will be proven in a court of law — I promise you."
The network claims 3,300 members, donors and volunteers nationwide and has long operated in the open. Goodwin said he was personally involved in 39 deaths.
"We have not hidden our goals," he said. "I'm very proud of our mission."
Authorities have raised concerns over how carefully the group screens people who want to die after questions arose about the death of an Arizona woman the group helped in 2007. Police said Jana Van Voorhis was depressed but not terminally ill.
Goodwin said it was "not inappropriate" for her to die as she suffered from other illnesses, but he said he tightened the vetting process after her case. He said applicants are now asked to detail their complete mental history.
Goodwin said that the specter of prosecution always loomed, and that the group knew that one day its work could make headlines.
"And that day is upon us," Goodwin said. "But it was done with deliberateness as a means of moving the political debate on this subject to a new high. And we hope that this case will set a precedent in case law."