Ride For Life: Seeking hope half a world away

DARRIN LEWIS has gotten a new perspective about life over the past seven years, and he's come to realize that nothing has been promised to anyone.

Now at age 40, Lewis and his wife, Tina, are the proud parents of 4-year-old Gabrielle. Their daughter is somewhat of a miracle in light of the fact that seven years ago, when he was first diagnosed with ALS, doctors told Darrin he only had about two years to live.

ALS (amyotrophic lateral sclerosis, commonly known as Lou Gerhrig's disease) is a fatal neuromuscular disease with no known cause and no known cure. It slowly robs sufferers of their mobility, their independence, and for many, their lives. It is considered a terminal illness, with only 10 percent of diagnosed patients surviving beyond 10 years.

Over time as the disease has progressed, it has stolen or substantially reduced Lewis' ability to use his arms, then his legs, and more recently, the muscles needed for speaking, eating and holding his head up. He is also losing the use of muscles needed to breathe on his own.

Although Lewis' mind and emotions aren't directly affected by the disease, he has to live with the frustration caused by being "trapped" in a body that can't function.

He now has very limited speech capabilities, but with the help of a language program and specialized equipment, Lewis has been able to sustain his ability to communicate through the use of his computer.

"ALS is like a black hole," he said. "It sucks the life out of everything around it."

A former resident of Belmont County, Lewis now resides with his family in Tucson, Ariz. His friends and relatives in Ohio, Arizona and elsewhere have pulled together through this difficult struggle. Lewis' family says he has maintained a positive attitude and has been a source of inspiration for everyone.

This summer, Lewis found a new source of inspiration and the possibility to break free from some of the chains that physically bind him. He and his family are now looking forward to a trip to Beijing, China, where an experimental treatment is offering ALS patients something that currently can't be found here in the United States . . . hope.

In July, Lewis watched a special on CBS about the work of Dr. Hongym Huang, an American educated doctor now practicing in Beijing. Huang is a leading physician specializing in the transplantation of Olfactory Ensheathing Cells. The reported success rate among ALS who have received the treatment has been no less than incredible, family members said.

Ben Byer, an ALS patient shown in the television program, was walking one day after the OEC procedure and had regained his voice two days later.

Dr. Huang became experienced with the study of OECs at the laboratories of Dr. Wise Young, a leading expert on OEC research who is currently working at Rutgers University. However, transplant procedures are not available in the United States, where related research using fetal and embryonic tissue is restricted.

Many believe that medical breakthroughs for patients suffering from spinal cord injuries, Parkinson's disease and ALS have been hampered by governmental restrictions on stem cell research. Three years ago, the Bush administration placed restrictions on federal funding for stem cell research, which has remained at the center of ethical - and subsequently political - debates.

"It's very controversial in this country," said Darrin's cousin Bob Lewis of Belmont. "This procedure is fairly new, and they're still working toward a cure, but everyone who has had this surgery so far has experienced at least some improvement in speech and mobility."

The hospital in Beijing has become a magnet for Americans who have suffered from spinal injuries and debilitating neuromuscular diseases. Hundreds of patients and their families have done everything they can to gather money and make the trip in hopes of finding success through this experimental treatment.

Lewis says that he is hopeful, and as he awaits next month's journey to China, he has no kind words for President Bush's policy on stem cell research.

"If he had to walk in my shoes, stem cell research would be wide open," Lewis said. "People are going to get this treatment, and doctors are going to provide it. It's just a matter of what country they're going to have to travel to."

Lewis is scheduled to leave for Beijing on Nov. 27. He will be joined by one of his sisters and his father, Wilbur Lewis, a Belmont County native and former teacher in the Union Local School District who now resides in Arizona. Another sister will fly out and join them in December, and Lewis and his father will remain there after the surgery until they return home Dec. 23.

"(Dr. Huang's) view is that people don't have time to wait for more studies to take place," Wilbur Lewis said of the controversial procedure. "We don't know how fast results may come, how far it will go or how long it will last, but it's still very encouraging to Darrin and others like him."

During the procedure, millions of OECs are implanted in the right and

left lobes of the brain around the upper spinal area. Huang has concluded that the OECs "wake up" neurons that have been affected by the disease. The rejuvenated neurons restore communications between the brain and muscles, and in some cases, results are almost immediate.

Lewis understands that this is not a cure, and is simply looking at it as an opportunity for improvement.

"Only time will tell," he said.

Some day soon, he may have an opportunity to embrace his young daughter. Until then, he enjoys spending time with her, doing anything they can together.

"I've found out who my true friends are," said Lewis. "My wife is trying very hard to be optimistic, and I love her more now than ever. My daughter doesn't really understand, but knows that I can't walk and that I need help eating and going to the bathroom.

"However, we play outside with the dog and I chase her around in my wheelchair. She talks my ear off. We play on the computer and watch cartoons together. She sits on my lap when we watch cartoons, and I explain who the good guys and the bad guys are."

While living in Belmont County, Lewis enjoyed spending time at Seneca Lake and worked at the family's business, Belmont Mills. Out West, Lewis worked as the general manager of an Old Spaghetti Factory in Los Angeles. He later had to retire at age 33 as a result of the illness.

The owner of the Old Spaghetti Factory restaurant organization, who died this past year, told Lewis after he was diagnosed, "Darrin, this is the hand you have been dealt. You have to play it."

That's been his philosophy ever since.

Health insurance has taken care of his treatments so far, but obviously will not cover the treatment overseas. Tina and Darrin Lewis considered selling their home, getting a second mortgage and other options to come up with $30,000 to make the trip and the surgery possible.

However, through the encouragement of friends and "a pretty large family," they've decided to rely on a support system to help make it happen. Family members are helping with the costs, and contributions are being accepted to the Darrin Lewis OEC Transplantation Surgery Fund, 1415 S. Brittany Place, Tucson, AZ 85748.

Lewis and his father have actively studied information about ALS and have been in contact with many people who have undergone experimental treatments. Anyone interested in contacting Wilbur Lewis about ALS is encouraged to do so by e-mailing him at wlewis_5@msn.com.