Triumph of the Spirit: Patients Battle Neurofibromatosis

She retreated into seclusion, living off disability payments and communicating with the world by e-mail.

But then a retired nurse befriended her, and urged her to go see Dr. Munish Batra, a plastic surgeon who had assembled a small team of colleagues to help patients in need. They call themselves DOCS -- Doctors Offering Charitable Services -- and for the last four years they have slowly been repairing Ana's face, all for free.

'A Very Strong Girl'

"With the techniques I'm using, I should be able to get rid of 90 percent of her deformity," Batra said.

So far he and his colleagues have operated on Ana four times, and expect to do two or three more surgeries.

A phone conversation with Ana can be fast-paced. She answers a question about neurofibromatosis before a reporter is finished asking it. She says she is determined not to let the disease define her.

Neurofibromatosis: Courage Against the Odds

"I don't really pay attention to people. I've stopped caring what they think of me," she said.

Batra says he understands.

"I think this is a very strong girl," he said, "who doesn't want to have the feeling that something is wrong with her."

Giving Back

Batra came to the United States as a child from northern India, where poverty was rampant. He found success as a surgeon. His father urged him to give back to the society that had given him a comfortable life, which is why he and a fellow doctor, Michael Halls, formed DOCS.

Rodarte appeared perfectly healthy when she was born. But as the disorder spread, her parents went from doctor to doctor, trying to get her help. She had a series of operations as a child, but there was no lasting improvement.

When she first came to Batra, he says, she clearly did not expect very much.

"I made a pact with her that she had to stick with me," he said.

The team did an operation to remove some of the excess tissue that had grown. They did another to work on her jaw and reshape her nose. In another, they worked on her left eye socket, which had been damaged over the years by the tumors.

"He's great," Rodarte said. "He's more like a friend than a doctor."

She said none of the other doctors she had been to were like that.

Batra says his relationship with his patient is as important as the work he does in the operating room, especially in a long-term case such as Rodarte's.

"For the first two years I was pushing her to keep going," he said. "Now she's pushing me to do more."

Rodarte knows, she says, that there may be a lot of work ahead. The tumors caused by neurofibromatosis can be controlled by surgery, but there is, as yet, no cure for the underlying genetic disorder.

"The main hope is that we'll develop drugs, non-surgical treatments that prevent neurofibromas," or tumors, from forming, Korf said.

The Children's Tumor Foundation provides information and advice for patients and their families, as does Neurofibromatosis, Inc., a non-profit organization based outside Chicago.

"When you hear, 'No treatment, no cure,' that is unacceptable," said Jill Markland, Jesse's mother. She urges people to donate money for research.

"There's stuff going on," Hunter-Schaedle said. "There's hope."

In the meantime, Ana Rodarte says she has been able to have a relatively normal life. She recently broke up with a boyfriend. She is close to her parents, and says they never sheltered her. She is now studying to be a beautician, helping other people improve their looks.

"I have a life to worry about," she said. "I don't have time to worry about my condition."

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