By Lorraine Ahearn
Copyright News & Record
Greensboro, NC
9-26-04

There comes a point where it's a race against time. This is the point.

She got the diagnosis at 56, the same age that her mother was. It even started on the same side, making her right foot drag a little, then working its way up her legs, down her right arm to her hand, into her tongue so that her speech is slurred.

Her mother was diagnosed with Lou Gehrig's disease -- like eight relatives before her -- and was dead less than four years later, buried on her 60th birthday. Next week, Pat White turns 59.

"Probably by December I won't be able to talk," the Greensboro woman says. "In the back of my mind, I had always known this might happen."

And as with "Iron Horse" Gehrig, the baseball legend for whom the rare degenerative disease is named, Pat White doesn't give up easily.

At the Bryan Family YMCA, where she still swims three times a week, there's a plaque dedicated to White for raising $65,000 for the "We Build People" campaign. She was an expert clogger, once rode a Harley Sportster to Colorado, and won the employee of the month award at W.T. Grant for selling the most blankets in July.

So with what seems a death sentence, she sees one last, bottom-of-the-ninth play: Embryonic stem-cell research -- not here, but in China.

"At Johns Hopkins, they're doing it with stem cells from bone marrow on rats with ALS (amyotrophic lateral sclerosis, the formal name for Lou Gehrig's Disease), and next they'll try it on monkeys," White was saying the other day. "They don't have the money, and I don't have the time."

The Beijing procedure, injecting fetal cells directly into the brain and spine of the ALS patient, is hotly contested -- but not for the reasons that make the use of human embryos controversial in the United States.

According to a CBS story televised in July, Dr, Huang Hongyun has been performing the procedure for 18 months, and some patients have reported regaining speech and mobility.

However, support groups for the 30,000 Americans with ALS are meanwhile getting reports that some have traveled to China, paid $20,000 for the radical procedure, and deteriorated or even died soon after.

Yet White, who took care of her mother during her battle with the disease, sees no hope but experimental research. Though she can still walk short distances in leg braces, she is mainly confined to a wheelchair, and fears that her slurred speech signals that the disease is progressing closer to the nerves that control her breathing. That was the end for her mother.

"I would sign every kind of form they would give me to be a guinea pig," said White, who is scheduled to go to China in March, but is trying to move her surgery up to December.

"The best I could hope for is to get better for a year, and in that year, maybe the research will catch up."

To this day, little is understood about what causes the disease. And when White got a three-page family medical history from her mother's relatives in West Virginia, it confirmed what she already knew: A family tree plagued by the disease, which is inherited in only 10 percent of patients, and mostly strikes men.

After her 56th year began with a limp, there wasn't much White could do. She went to Europe and saw the Italian Alps from across Lake Cuomo. She rode her new Harley to Myrtle Beach, a turquoise Fat Boy now in the basement. She has neighbors over for a game of Kings in a Corner. She was always lucky at cards.

Next week, she turns 59, but she and her husband will celebrate early.

"I used to sit back and wait to see if anybody was going to throw me a party," she says with a throaty laugh. "I'm proactive now. I plan my own."