c. 2004 Religion News Service

GROVE HILL, Ala. _ Wilbur Newton has traveled to a fearsome destination.

The once-healthy hunter and family man, provider and prankster can no longer move, or talk, or feed himself. He is like a foreigner trying haltingly to communicate in a strange country.

At his early 56th birthday party last week, Newton couldn’t even blow out his candles or unwrap his gifts or say thank you. He could only smile when his family and friends told stories, and look at them with love and some other strong emotion trembling at his mouth and spilling into his eyes.

Five years ago, his leg dragged unexpectedly as he tried to run across a road. It took months and several doctors to find out why: His motor neurons, cells that transmit signals from his central nervous system to his muscles, were dying. He had amyotrophic lateral sclerosis, better known as Lou Gehrig’s disease, or ALS. Incurable, its cause unknown, it generally kills within two to five years.

At his party, the former welder sat propped up in an easy chair, talking with his eyes.

His eyes were so bright and happy, visitors commented on it.

The reason seemed clear: He was about to strike out on a journey full of hope _ a 20-hour flight to China.

Kevin Lyles, 44, knows that unless there’s a miracle, he too will live like Newton, his former co-worker.

At 6-foot-1, Lyles looks healthy. He ambles over to greet a visitor with a friendly grin. Until August, he still was working as an electrician for Weyerhaeuser Company, which operates a Wilcox County paper mill.

But Lyles, a father of four, can no longer speak or chew. He had to stop running because his breathing capacity has fallen. Lyles has a particularly lethal form of the disease that first attacked muscles needed to breathe and eat. He scribbles thoughts on a small pad of paper.

ALS, he writes, is like being in prison.

In 2001, he was directing the music at church when he noticed he couldn’t catch his breath, says his wife, Nikol Lyles. That fall he was diagnosed with ALS.

As the couple visited doctor’s offices in search of treatment, they encountered those whose bodies were wasted by the disease.

“The 1st clinic we went to I was shocked,” Kevin Lyles writes. “I wanted to cry. I was looking at my future and I didn’t like it.”

He and his wife say they now accept that he has the disease. But they haven’t accepted that he will die.

That’s why he, too, decided to journey to China.

This year, Lyles and Newton learned about a new treatment for ALS patients in Beijing, one so abhorrent to Lyles that he kept it from his wife for months. A neurosurgeon, Dr. Hongyun Huang, had implanted tissue from aborted fetuses into the brains and spinal cords of paralyzed patients with reports of some success, and he had started to work on ALS patients. According to Internet chat and a TV news report, it has reversed or slowed the progression of the disease in some cases.

It was a discovery that plunged Lyles, Newton and their families, all Southern Baptists, deeply into prayer. All are steadfastly against abortion. And in China, they knew, abortions are sometimes coerced. The nation strongly encourages a one-child-per-family policy as a way to control population growth.

The Southern Baptist Convention has opposed use of fetal tissue and stem cells in research or treatment.

Using such tissue would allow “electively aborted babies to be exploited for scientific and commercial purposes,” according to a 1992 resolution. A 2000 resolution opposed the sale of fetal tissue, arguing that “Sale of their tissues is an assault on the biblical truth that all human beings are created in the image of God.”

But Baptists are not bound by the convention.

Ultimately, “It’s between you and God,” said Kevin Lyles’ father-in-law, the Rev. Benny Harrison, preacher at Christian Fellowship Baptist Church in Thomasville.

One night, torn between his son-in-law’s terrible future and the dilemma over the aborted babies in China, Harrison was lying in bed, awake.

“Seeking the Lord,” he said.

An Old Testament passage came to him, he said, the one in which Joseph’s brothers sell him into slavery in Egypt. The story begins with a terrible act _ the sale of their brother _ but ends with redemption, when Joseph, who has risen to a position of power in Pharaoh’s palace, saves his family from famine.

“They meant for bad,” Harrison said. “God meant for good.”

It’s like that with the babies, he said. Abortions are wrong. But maybe the babies can help his son-in-law and others.

He believes God reminded him of that passage, he said.

Nikol Lyles also found comfort in those words.

“Something good can come out of something bad,” she said. “They will continue the abortions anyway. They’re throwing these cells away every day.”

Edith Newton, Wilbur’s wife, said they, too, prayed about it.

“God just gave me that peace that it was OK,” she said. “Those babies were going to be aborted regardless of what my beliefs are.”

It would be no different if a murder victim’s family donated his organs, she said.

“Are you going to say, `No, I don’t need his heart because somebody killed him?”’ she asked. “I don’t think so.”

Many in this conservative, church-going county have agreed, judging from the amount of money each family has raised _ $20,000 by the Newtons, $35,000 by the Lyleses. Each treatment costs $25,000, including travel expenses for two.

Not much is known in the United States about Huang’s treatment, say researchers and ALS advocates.

Huang has treated hundreds of spinal cord injuries and about 60 ALS patients, said his go-between in the United States, Stephen Byer of Wisconsin, who said his ALS-stricken son has improved after undergoing the therapy.

According to an article in The Scientist, an international news magazine that covers developments in the life sciences, Huang, a neurosurgeon, takes cells from the olfactory bulb _ the place where we recognize smells _ of aborted fetuses and injects them into the brain and spinal cord of patients. Doctors in the United States don’t know how safe the procedure is. Huang trained in the United States and worked with laboratory animals, but it is unclear whether the procedure was first tested on animals.

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Huang presented the therapy to scientists gathered three weeks ago at Harvard’s teaching hospital, Massachusetts General Hospital in Boston. But plenty of questions remain, said Diane McKenna-Yasek, a research nurse who attended the presentation.

“There was very little scientific data presented,” she said. “It involved mostly a couple overview slides and then there were videotapes of patients before and after injection.”

Missing were objective data that measured results, she said. Huang, based in Beijing, has been unable to follow patients over time. He also didn’t provide specific information about complications from the surgery other than to say one ALS patient had died two months after surgery from a heart attack.

“He indicated there were no immediate complications from the procedures,” she said. “We asked if there had been deaths more immediately as a result of the procedure and he said no.”

ALS research involving stem cells and fetal tissue is going on in the United States and other countries, but in controlled, clinical studies.

“My advice would be no, not to go, because there’s no evidence that this therapy is credible,” said Dr. Marinos Dalakas, chief of the Neuromuscular Diseases Section at the National Institute of Neurological Disorders and Stroke. “It hasn’t been validated. It hasn’t been published in a peer-reviewed journal and nobody has seen the results.”

He said he doesn’t want to reject what could be a promising therapy. It just needs to be tested scientifically.

“It’s a bad disease and there’s no cure and all of us are struggling to find something,” he said.

ALS patients are desperate. They don’t have time for research papers to get published or the government to approve.

In the 1970s, they flocked to Florida for injections of snake venom, treatments that seemed to spark some improvements but which were later debunked in two federal studies.

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Newton and Lyles are willing to become guinea pigs. At the very least, they will have done what they could to find help. At the most _ well, who can say?

Lyles scratches his hopes in ink: “Cure or a little time, good time with family. Maybe it will open doors for a cure.”

Newton raises his eyebrows high to indicate his excitement. He shakes his head to indicate he is not afraid.

He can’t explain just what he expects or hopes will happen. But his wife can.

“If that only means lifting his arm to put a spoon in his mouth, that would be wonderful,” Edith Newton says. “If he could speak, it’d be wonderful.”

She allows herself to dream out loud.

“If he could walk, that would be wonderful.”

She adds, as if pinching her hopes back into a tiny ball: “Any improvement would be enough.”

They left for China on Oct. 1.

MO/JL END TOLKKINEN

(Karen Tolkkinen is a staff writer for the Mobile (Ala.) Register.)