By Roxanne Patel Shepelavy

updated 1:39 p.m. ET March 9, 2008

Ricci Kilgore swings her hips to the right, throws her leg into the air and lands her boot with a thud on the fresh snow. She swings her hips to the left, crunches her left boot down and then swings back again. She struts 10 feet on the snowy concrete like this, ambling side to side like a caricature of a cowboy. Then she climbs a flight of stairs and comes back down again, dancing a little as she plops in her wheelchair, her bright smile practically melting the snow around her. It’s a March day in Waterville Valley, New Hampshire, at the foot of a ski run, and Kilgore has just slalomed down the mountain on a monoski. But the walk from the end of the run to her chair is the part that’s really hard. It doesn’t look perfect, exactly, but it is what it is: walking. That, at least, no one can deny.

Only, Kilgore says she shouldn’t be able to walk. In 2000, the onetime Olympic track-and-field aspirant was returning from a meet with her teammates when she was thrown 60 feet out the van window on an icy interstate. Her spinal cord nearly severed at the 12th thoracic and 1st lumbar vertebrae, leaving her a paraplegic at 19 years of age. She says her doctors told her she’d never walk again. And for more than a year, she couldn’t move her legs or feel anything below her waist besides a twinge in her left thigh. A high school ski champion who lettered in five varsity sports, Kilgore learned to use the muscles she could still control to do almost everything she used to: She monoskied, speeding down the mountain in a bucket seat mounted to one ski; she saddled and rode horses; she hunted. But she couldn’t walk, the one thing that kept her from feeling like her old self.

Then in 2001, Kilgore began to explore the potential of stem cell treatments. She met a renegade American doctor who promised to heal her spine, the first time anyone told her she might be well again. That summer, she journeyed to a beachside clinic in the Dominican Republic for the first of four injections of what the doctor told her were fetal stem cells. Within two weeks, Kilgore reports, she could stand for several seconds; within two months, she took 100 steps with a walker in a park near her home in Reno, Nevada. Now — three more treatments and six and a half years later — she can sometimes walk unassisted, climb stairs and feel sensation below her waist. “This wasn’t supposed to happen,” she says. “But it did. I can walk. It’s amazing.”

Stem cell treatments
On the face of it, Kilgore’s story seems headline-worthy proof that stem cell treatments can heal the most stubborn of injuries and ailments. But scientifically speaking, Kilgore proves nothing. There could be more mundane medical explanations for Kilgore’s recovery, including her incredible athleticism and fitness level. Her doctor, William Rader, M.D., of Malibu, California, is licensed as a psychiatrist. He has not conducted standard studies, in which some patients receive the stem cells and others in a control group get a placebo, and has not published his success and failure rates in a medical journal, although he says he plans to in the future. Nor has he tried for approval from the Food and Drug Administration, which regulates clinical trials and transplants of human cells. “There are no short- or long-term side effects or adverse reactions with the cells we are using,” Dr. Rader says, defending his unorthodox protocol. “Would you like it to be your brain-damaged child who would receive the placebo and in some cases even die, when I have successfully treated hundreds of brain-damaged children?” His therapies would be illegal in the United States, and if he offered them here he could risk substantial fines from the FDA, civil and criminal charges and the revocation of his license by the state medical board. Instead, Dr. Rader treats his patients — at $30,000 for the first treatment and $12,500 thereafter — from the relative anonymity of the Dominican Republic.

Back home, scientists have no way of knowing what he’s injecting — whether it’s even stem cells at all — not to mention what the risks might be for patients. A patient guide issued in 2007 by the International Campaign for Cures of Spinal Cord Injury Paralysis (ICCP), a consortium of major spinal cord research groups, advises against experimental therapies done for material gain and not backed by animal studies and clinical trials. “Anecdotal studies claiming improvement add little to our knowledge,” says Martin Pera, Ph.D., director of the Center for Stem Cell and Regenerative Medicine at the University of Southern California in Los Angeles. “Without a formal study, it’s not being done in a way that’s useful for science.”

What science does know about stem cells is relatively little but extremely promising. Since 1998, researchers have defined human embryonic stem cells as immature cells, only a few days old, with the unique ability to develop into almost any kind of cell, including nerve, muscle, bone and heart tissue. The rest is mostly theory: Scientists hope one day to learn how our body assigns these cells to specific parts of the body early in our development. If they can then replicate that process in a lab, the theory goes, they can turn stem cells into treatments to strengthen heart muscles, heal the damaged brain cells that cause Parkinson’s disease or replace cancerous cells with healthy ones. In the case of injuries such as Kilgore’s, the hope of hopes is that stem cells could be converted to healthy nerve cells with the power to regenerate a spinal cord.

Untested procedures
For now, research on stem cells derived from embryos — the tiny cluster of cells formed in the days after sperm fertilizes a woman’s egg — remains essential. Until recently, harvesting these stem cells has required destroying the embryo, something opponents of the research, including President Bush, equate with destroying a life. Last fall, researchers in Wisconsin and Japan announced they’d transformed adult skin cells into embryoniclike cells, a breakthrough heralded for its potential to speed up research and to quell the controversy over using embryos. “It’s a stunning event, but it will take some time to fully appreciate its usefulness,” Pera says.

Meanwhile, stem cell procedures for patients such as Kilgore are not merely unproven in this country; they haven’t even been tested yet. A California biotechnology company plans to apply this year to the FDA to conduct the first Phase I clinical trial of an embryonic stem cell–derived treatment for acute spinal cord injuries. But the approval and testing process is so involved that initial results wouldn’t be seen for a few years. Researchers say FDA-approved stem cell treatments for type 1 diabetes, Parkinson’s and heart disease are at least 10 years away. Despite the heated debate over stem cell research in this country, the truth is that we still don’t know what the cells are capable of, what they will tell us about diseases and how to treat them, or even what the science will mean for patients like Kilgore. “This is really a new field of research, only eight or nine years old,” Pera says. “And we don’t yet have a lot of the answers we need.”

Kilgore couldn’t wait. She worried that she’d spend most of her life in a wheelchair waiting for a cure. And she’s not alone. Perhaps thousands of Americans have followed the illusory promise of stem cells wherever it takes them — as far as China, where multiple clinics offer patients injections of umbilical cord blood or fetal cells to treat spinal cord injury, Parkinson’s, multiple sclerosis and more. These are patients with incurable ailments who are willing to take what may be serious risks in order to walk or live a few years longer. And they point to one power of stem cells that’s already been realized: the power to raise hopes that science can cure. “This is an audience desperate for hope, and they will seek out that hope in any avenue that looks promising to them,” says Sarah Youngerman, vice president of communications for the Coalition for the Advancement of Medical Research, a pro–stem cell advocacy group in Washington, D.C. “What’s going on in other countries has everything to do with the hopelessness they feel about the situation in this country.”

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