Ride For Life: Friends fight to send Florida fireman with ALS to China for experimental surgery

Plenty of people have good things to say about John Bruce.

He's kind, generous, hard working, humble. The go-to guy for anyone in need of help, they say.

But the true testament to the Fort Lauderdale firefighter's character is seeing how his family and friends have responded since Bruce, 41, was diagnosed with Lou Gehrig's disease, leaving his speech terribly slurred, his hands curled up at his sides and his legs growing weaker and weaker.

His mother retired early to help care for him. His young nephew stepped up to run his trucking business. His sister offered to sell her house to help pay the mounting bills.

And his friends and co-workers are holding a huge benefit Sunday at the Round Up Country Western Club in Davie to raise $30,000. The money will be used to send Bruce to China for experimental surgery that is purported to slow the fatal disease and improve the years he has left.

Joe Kessling, a Broward Sheriff's Office detective who has been Bruce's fishing and hunting buddy since the early 1980s, is the driving force behind the fund-raiser. He remembers how Bruce responded when Kessling was collecting things for a Sheriff's Office lieutenant's friend who lost her home in a fire.

"He went out and filled up her kitchen," Kessling said. "I had to bring my truck to his house to move all this stuff. I was in shock. John didn't even know this lady."

Lou Gehrig's disease, or amyotrophic lateral sclerosis, is a devastating condition in which the nerve cells in the brain and spinal cord that control the body's voluntary muscles are attacked and killed. The muscles atrophy, and people eventually lose the ability to move their arms, legs, and body or to breathe on their own.

The disease does not affect the intellect, so during the three to five years most people live with ALS, they are painfully aware that they are withering away.

Bruce's wife, Michelle, said his doctors told them there was only one FDA-approved treatment for ALS, a drug that can prolong a person's life by a few months.

Given the bleak outlook, it was relatively easy for Bruce to decide to go to China for the controversial surgery, which involves injecting cells from aborted fetuses into the brain.

His family supports his decision. They feel the operation is his, and their, only hope.

"It takes a strong person to fight this disease," Bruce's sister, Tonya Kilcrease said. "It's hard to fight, especially when you have to depend on others to do simple tasks ... I'm really proud he's fighting it."

Aside from the ethical problems some might have with the operation, Western doctors say the procedure is untested and unproven. They also say the Chinese surgeon, Dr. Huang Hongyun, is not tracking its long-term effects on patients.

"I hate to cry on the party, but it's a total waste," said Dr. Walter Bradley, one of Bruce's physicians and the director of the University of Miami School of Medicine's ALS center.

"The results are a total bust," Bradley said. "We've had three patients who have gone there ... None showed more than two to three weeks of possible improvement, and that's probably the placebo effect."

Even Dr. Wise Young, a leading neurologist who helped train Huang at Rutgers University several years ago, said he is skeptical about the effects of transplanting olfactory ensheathing glial (OEG) cells, harvested from the noses of second-trimester fetuses, on ALS patients.

But John and Michelle Bruce will not be dissuaded.

They've tried everything else they could find: removing the fillings in Bruce's mouth to lower the mercury level in his body; going on an organic diet; taking 40 different minerals and vitamins daily; paying for Rilutek, the expensive, FDA-approved drug; trying chelation, an IV treatment that is supposed to pull the heavy metals from the body; and drinking BuNaoGao, a bitter Chinese herbal tea that is supposed to have therapeutic powers.

Nothing has worked.

Bruce is trying to downplay his expectations for the surgery, but his wife admitted she can't wait to board the plane for Beijing.

The Bruces are encouraged by what they've heard from Steven Byer, a Wisconsin man who says his 34-year-old son's ALS has not progressed since he had the surgery in July.

Byer is such a believer, he is coordinating trips for hundreds of other Americans who want the surgery. He said he does not get paid for his efforts.

The Bruces do not have the years it would take for American and European doctors to test this fetal-cell surgery and get authorization to use it here, Michelle Bruce said.

"We tried it their way for a year, and all he's doing is deteriorating," she said. "They told us to just get our affairs in order and be as comfortable as you can."

Shannon O'Boye can be reached at soboye@sun-sentinel.com or 954-356-4597.