Thursday, October 07, 2004
By KAREN TOLKKINEN
Staff Reporter
Copyright 2004 al.com. All Rights Reserved.

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. All he could do was 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 knows that unless there's a miracle he, too, will live like Newton, his former coworker.

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

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

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. Doctors thought he might have been exposed to a chemical. They tested his lungs. They tested him for acid reflux. His speech was labored. They said they went to a Northern neurologist who told them not to worry, all Southerners talked slowly.

Finally in the fall of 2001, he was diagnosed with ALS.

As he and Nikol visited doctor's offices in search of information and treatment, they encountered those whose bodies were wasted after several years with the disease.

"The 1st clinic we went to I was shocked," he writes. "I wanted to cry. I was looking at my future and I didn't like it."

He and Nikol 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.

New treatment:

China is a day's travel away for Kevin and Wilbur. Culturally, though, it's like going to a different galaxy. At 1.3 billion people, China is the most populous country on earth. It's an ancient place of tea and silk, palaces and temples. Also, of healing -- acupuncture and herbs, holistic medicine.

This year, Kevin and Wilbur learned about a new treatment for ALS patients in Beijing, one so abhorrent to Kevin 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 Kevin and Wilbur 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's 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 within Pharoah'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 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."

Harrison said some members of his church questioned the treatment. But they came around, he said, once he explained his way of looking at it.

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

"I'm for him and them in any decision they make," said Ward Edge, one of Wilbur's best friends and fellow church member. "I'd do anything in my power to cure my wife or my kid or myself."

The procedure:

What is known about Huang's treatment?

In the United States, not much, 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. Scientists and doctors in the United States don't know how safe the procedure is. Huang trained in the U.S. and worked with laboratory animals, but it is unclear whether the procedure to be used on Wilbur and Kevin was first tested on animals.

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 involved with ALS studies 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 was 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 U.S. 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."

At the same time, 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.

Hope:

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. If anything, it proved how powerful are hope and human belief.

But in this case, who knows for sure? Nobody has verified Huang's work, but nobody has disputed it either. Not enough is yet known. Wilbur and Kevin 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?

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

Wilbur 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, Edith, can.

"If that only means lifting his arm to put a spoon in his mouth, that would be wonderful," she 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 Friday.