© Copyright 2003 St. Petersburg Times. All rights reserved
By COLLINS CONNER, Times Staff Writer
Published September 5, 2005

He played hockey through high school and into college; he built the patio of his dream home and its stone walls. He swept Rose, his bride, off her feet.

Rose, who now spoons food into his mouth.

John Eannel, a 43-year-old father of three, can't grip a fork or navigate it through his lips. He has amyotrophic lateral sclerosis, Lou Gehrig's disease.

Like most everyone else this past week, the Eannels have watched the horror unfolding in New Orleans and on the Gulf Coast. It is an incomprehensible catastrophe that overwhelms their personal struggle.

But ALS is relentless and incurable. It incrementally paralyzes its victims, killing them within five years. And Eannel, who is starting year three, is rapidly losing ground.

So he is going to China, to a hospital in Beijing, for an experimental stem-cell procedure that isn't performed - or even allowed - in the United States. To pay the $30,000, he and his wife sit in front of Publix grocery stores, asking for donations from strangers.

But here's his choice: That or nothing.

"If it doesn't work, at least I tried," Eannel said.

"Someone in my shoes is always looking for a miracle."

He had backaches for a long time - bad enough that he drove his FedEx Ground truck standing up. Then, two years ago, he began tripping over carpet edging. At his sister's wedding in September 2003, he was certain something was wrong.

No Fred Astaire to begin with, he couldn't control his feet.

"I have to get off the dance floor," he told his wife. "I feel like a total spaz."

Days later, his doctor said his muscle problems could be caused by anything from a vitamin deficiency to ALS. All Eannel heard was the ALS part.

"I didn't know what that was," he said. "I came home and looked it up on Internet. I was terrorized. I was up all night."

Within a month, Eannel's shoulder muscles were trembling uncontrollably.

Up to then, Eannel's life had been on a forward path. He was married to a joyous, beautiful woman. They'd just had a baby - a girl to go with the two boys. They'd bought their first big house.

Quickly, their security vanished. An independent contractor, he had to give up his FedEx route. He worked for a fuel/food mart "until I started falling behind the counter."

He had to go on Social Security disability. They lost their house.

Not long after Rose's sister was diagnosed with breast cancer, a mammogram on Rose showed precancerous cells. She decided to undergo a prophylactic double mastectomy.

"We wanted to make sure that one parent would be there for the kids," Eannel explains.

* * *

Eannel's parents gave the family their home and bought another.

His dad, also named John Eannel, is a problem solver. A retired New York detective and bank loan officer, he figured each illness had a treatment.

ALS has no treatment; medicine can sometimes reduce symptoms but won't stop Eannel's downward spiral. At that, he said, the only drug he was offered cost $900 a month. It's approved by the FDA, he said, but not covered under Medicare.

His dad, the problem solver, was flummoxed.

"Every neurologist we went to, he never even got an aspirin," Eannel's father said.

"We started doing alternative medicine. Diets (in which you) take out the sugar, flour, oils, fats. All these different vitamins you buy at health food stores. It's real expensive, and none of it is covered."

They saw a television program about Dr. Hongyun Huang, who studied in China and then at Rutgers University in New Jersey. Huang treats ALS victims and patients with spinal cord injuries by injecting them with fetal cells called olfactory ensheathing glial cells.

"It's your only hope," Eannel's dad said. "There's nothing else left."

"It's amazing," John Eannel said. "Family and friends and friends of friends are donating. We're getting money from people we don't even know." Thus far, they've raised about $20,000.

In published reports, U.S. doctors call Huang's work "promising" but warn that they've seen only anecdotal evidence that patients improve after his treatment. They haven't seen records of how the cells are prepared, how the patients fare over time and whether they suffer complications from the surgery.

Huang himself doesn't call the injections a cure. In published reports, the procedures are considered successful if the patient feels sensations or marginally moves toes or fingers. Some patients have described more significant improvements.

Eannel readily acknowledges the limitations of Huang's procedure.

"I don't see any proof," he said. "But, though this may be optimism to the max, about four months ago, I put in a reservation anyway to get this done."

His doctor initially was cautious, Eannel said. "I saw him a few months ago and told him I was going (to China).

"He said, "Go for it."'

That's when Eannel and his wife began setting up shop on the sidewalk in front of Publix grocery stores around Pasco County. Sometimes they're joined by kids from the Little League team he has coached for 10 years. His church, Sun Coast Baptist, took up a collection. Parents from the Cherry Tree preschool donated. Sunshine Lutheran Brethren Church, the church attended by Rose Eannel's brother and sister-in-law, is holding a spaghetti dinner Saturday for his benefit.

"It's amazing," Eannel said. "Family and friends and friends of friends are donating. We're getting money from people we don't even know." Thus far, they've raised about $20,000.

* * *

Eannel and his father will leave Sept. 17 for Beijing; they will live at West Hill hospital there for 30 days.

During the surgery, Dr. Huang will drill two holes in Eannel's skull and inject his brain with 2-million fetal cells. If Eannel's symptoms improve, it should be evident quickly.

Eannel has talked to one man who experienced a reduction in symptoms. He has talked to people who report no progress. He knows not to look for a cure.

But he'd like legs that are less spastic. He'd like hands strong enough to click a computer mouse without straining. He'd like to speak clearly and easily.

At his team's Little League games, he'd like to walk on the field with a walker.