Hope overseas

There isn't much a mother wouldn't do for her children, but there's little else Karen Mogelnicki can do for her eldest son, Jim Trickey, who has Lou Gehrig's disease.

"Everything else is out of my hands," she said.

Lou Gehrig's disease, or amyotrophic lateral sclerosis, is a muscular disorder that attacks nerve cells in the brain and spine eventually leading to paralysis. Trickey, 39, was diagnosed with ALS in 2002.

In late summer, Mogelnicki heard on CBS News about a surgical procedure in China that could help ALS patients and people with spinal cord injuries. She immediately began doing research and suggested that her son consider it.

Going to China for an experimental surgery seems risky, but "right now it's the only thing he can do," Mogelnicki said.

There is only one drug that has FDA approval for ALS treatment and it's not always successful, she said. In the 60 years since baseball great Lou Gehrig was diagnosed with the disorder, it doesn't seem there's been any great advancement, Mogelnicki said.

Stem cells and gene therapy treatments seem to hold the most hope, and the most controversy. A surgical procedure using implanted fetal cells could help Trickey regain some of his motor strength and improve his mobility.

The procedure is so new -- and so controversial -- that Trickey will have to go to Beijing, China, for the surgery. It isn't performed anywhere in the United States and isn't likely to be anytime soon.

The procedure uses olfactory ensheathing glial cells from the olfactory bulbs of fetuses aborted in the second trimester of pregnancy. The cells are collected, grown in cultures and then injected into the patients in three places -- two locations in the frontal lobe of the brain and at the base of the spinal cord. The cells have the ability to regenerate damaged nerves. More than 4 million cells are injected during the procedure.

Scientific experiments with the olfactory cells are being conducted on animals in the United States, but human trials aren't allowed. The federal government has banned using embryonic stem cells for research beyond the lines that already exist. China has no such ban.

Contemplated issues

The Trickeys, parents of three children under 10, considered all the ramifications of the surgery. There was pause when they realized the cells come from aborted fetuses. They had saved the umbilical cord blood from their daughter, Gracen, now 2, who was born just months after Jim's diagnosis. But those cells couldn't be harvested for this procedure. And with China's strict policies on the number of children per family and the fact that the abortions were being performed regardless, Jim Trickey said it seemed right to get the implants.

"They would just be throwing away those tissues and cells, even if people could benefit from it," he said.

Both he and his wife, Brandy, considered stem cell research an issue in the presidential election. While Sen. John Kerry talked about why more research was necessary, the Trickeys voted for Bush.

Brandy Trickey said it was because she knew that regardless of who won the election, any research that was approved wouldn't bring about any advancement that might help her husband now.

So the couple is preparing to leave Cape Girardeau in April for a trip to China. The Trickeys have raised enough for the surgical procedure through donations and benefits but still need money for travel and housing during their stay. Some money has been earmarked through donations made to the Muscular Dystrophy Association's local chapter.

The surgery costs between $10,000 and $20,000. Insurance won't cover it, and the Trickeys will be in Beijing for at least four weeks -- two prior to the surgery and two in recovery. Brandy Trickey and Karen Mogelnicki both plan to go, splitting their time so that a relative is always with Jim.

Dr. Huang Hongyun, the neurosurgeon who performs the fetal implant surgeries, has a waiting list of 1,000 names. It usually takes about a year from the time a name gets on the list until the surgery. Most of the doctor's procedures have been done on patients with spinal cord injuries. His work with ALS patients is still new.

That puts Trickey a little on edge. Fewer than 50 ALS patients so far have had the fetal cell implants. He's talked with some and with people like him considering the surgery. But he doesn't have time to wait for research and more tests or for the government to approve stem cell and gene therapy options.

Still some doubts

Research on patients who had the spinal cord implants showed almost immediate improvement and progression over an 18-month period. Trickey hopes for the best; Brandy Trickey said there are still some doubts.

"It's like anything else, it can affect different people differently. It might help me for six months or it could be two years," Jim Trickey said.

In the two years since his initial diagnosis, Trickey has gone from a weakness in his hands to seeing the disease move into his shoulders, legs and arms. He isn't able to work full time anymore as an inspector for the city of Jackson. He had to quit in August. He needs help getting dressed and with eating.

"I probably don't have as much stamina as I had before," he said.

Because symptoms are different for each person, doctors have limited treatment resources. There are clinical trials, but joining one means you might be getting the new drug or you might get a placebo. And it means going off all other medications, Trickey said.

Going to China for a relatively new procedure is a little scary, Trickey admits. "You've got to expect the unexpected and we're not sure what that is."

Trickey's doctors aren't encouraging him to get the experimental procedure. They also have not discouraged him from taking the risk.

There aren't many other options left for him, his wife said. "What would you do in our situation? What other alternative do we have?"

ljohnston@semissourian.com

335-6611, extension 126