Families don't regret trip to China
Monday, March 10, 2008 By ROY Hhttp://www.al.com/news/mobileregister/index.ssf?/base/news/120514054285810.xml&col...Staff Reporter



GROVE HILL -- Unable to talk, move his hands and feet or easily swallow, Wilbur Newton communicates with his eyes.

Sitting in his home in rural Clarke County, he watches his wife, Edith, move across the room and take a chair next to him.

"He likes when I scratch his head," she says lovingly, reaching over and rubbing his scalp. He gives a little smile.


In October 2004, Edith took her husband, who is stricken with amyotrophic lateral sclerosis -- Lou Gehrig's disease -- to China for an experimental form of stem cell treatment. Their journey was extensively reported by the Press-Register.

The Newtons traveled with a group of ALS patients and families from around the country, including Kevin Lyles, who worked with Wilbur Newton at the McMillan Blodell paper mill, which became Weyerhauser, and Lyles' wife Nekol.

"You grasp at anything," says Nekol Lyles O'Bryant.

Kevin died in the fall of 2005 after a short but dramatic improvement in the aftermath of their China trip. He died of respiratory failure.

His form of ALS attacked his body in ways different than the disease does Wilbur's. Kevin could walk at the time of his death.

Nekol has since remarried.

Newton has endured over eight years, most of them with his hands limp on the chair arms, his head propped up. He spends his days watching "Bonanza," "Little House on the Prairie" and "Andy Griffith" with caretaker Kelvin Chapman, while Edith is at work.

To communicate a word, he listens to Edith go through the alphabet, arching his eyebrows when she gets to the letters that spell the word that's on his mind. When she forgets the name of one of his horses, for example, she recites the letters until reaching "p" -- his eyebrows go up -- then "r."

Edith then remembers the horse's name: "Promise!"

The Newtons and Lyleses committed to their journey of hope -- 21 hours from Mobile to Beijing -- after a relative of the Lyleses had seen a TV report about a family whose son had found help from Hongyun Huang, a Beijing neurosurgeon.



Church and community donations helped raise the estimated $20,000 to $30,000 per family for the travel and procedure.

Huang, according to news reports, used cells that he believes have regenerative power. He obtained these cells from aborted fetuses. Both Edith and Nekol say they oppose abortion on religious grounds. In the therapy, they found themselves in a moral quandary but decided to go ahead with it anyway.

"We had a difficult time with the idea that stem cells were from aborted fetuses," admits Nekol, "but I'm a realist, too."

Huang's therapy has become controversial in medical circles in the United States, amid questions about its safety and effectiveness.

A June 2006 article in the Boston Globe focused on a study of Huang's work in the journal Neurorehabilitation and Neural Repair. "The results," the Globe reported, "are not just disappointing, they are disturbing, say scientists who have read the paper."

Nekol says she's aware of the controversies, but she and her husband were willing to try anything.

Along with their journey to China, the Lyleses explored other alternative therapies for Kevin, including massive doses of Vitamin C and chelation therapy, a process of removing metallic substances from the body.

"I stand behind the tried-and-true science of medicine," Nekol says.

Even so, she speaks with tears in her eyes of the moment that she visited Kevin after his surgery in China.

In the Beijing Hospital, where the surgery performed by Huang entailed drilling holes in her husband's skull, Nekol found Kevin doing something that he had not been able to do prior to the procedure -- he could speak.



She remembers it vividly: "He said, 'What's up, babe?' His voice was slow, it was thick. He told his children, 'I love you.'

"It was awesome."

His voice stayed with him for only three months. He got pneumonia soon after and began a further decline.

At her home, next to Newton, Edith takes his hand and fondles it. After her husband's surgery in China -- the same procedure as Lyles', as she describes it -- he responded to her in a particular way.

"He squeezed my hand," she says, holding back her emotions. She takes out pictures of them in China at the Great Wall. In the photos Newton is in his wheelchair.

He cannot squeeze anymore, but his breathing, Edith says, was better for a long time after the China trip. She says his breathing is getting more difficult again.

She attributes her husband's still being alive to their attempt, like the Lyleses, to pursue alternative cures.

"I defend him," she says of Huang, the Chinese neurosurgeon. "It just needs more work."

Nekol says she does not regret their trip either.

"We would have regretted not doing it," she says, holding a photograph of Kevin with their two small children. "When you're told you're going to die, are you going to die and not do anything? At least you tried."