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Indonesian 'Tree Man' trapped in his mutating body

FOREIGN EXCHANGE

Dede Koswara is covered in bark-like warts that have swollen his limbs and sapped his energy and limited his mobility. Treatment appeared to help, until side effects and a medical turf war stymied the effort.

July 16, 2010|By John M. Glionna, Los Angeles Times

"I give Dede a lot of credit," Gaspari said. "He wasn't angry. He wasn't suicidal. He was just sad. But he trusted me, another outsider who had come to stare and take pictures of him."

After Gaspari left the medical team, Indonesian doctors tried a second round of surgeries last year. Gaspari said he's not surprised the warts have returned, because removing the growth is only a short-term fix for the symptoms of the disease.

The real cure, Gaspari said, might involve a bone marrow transplant or other procedures not readily available in Indonesia.

"There are things I still want to do for Dede, but my hands are tied," he said. "The government seems to view me as some outsider butting in where I don't belong."

Indonesian health officials are reluctant to let Koswara travel abroad for care, fearing he would become exploited as a medical research project.

Agus Purwadianto, head of the research and development at Indonesia's Health Ministry, said, "We don't want him treated like a guinea pig."

* * *

Kowara's knows this: For a few months, he tasted the fruits of independence without the cruel stares — only to have his freedom and dignity once again snatched away by a disease he does not understand.

"My body has again betrayed me," he says, "but what can I do?"

His hands and feet mutating, Koswara is back to wearing the special zippered shirts, relying on family for his daily baths.

"For a cure," he says, "I'd go anywhere in the world."

For now, Ateng Koswara struggles to keep his dream alive.

"I want him back with me, working side by side in the fields, helping with the harvest," he says. "But when I look at him, I wonder if that will ever come true. He can't even hold a glass of water."

john.glionna@latimes.com

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