Patients like Willie face a terrible fate. Relentless and always fatal, MND kills motor neurones, the nerve cells in the brain and spinal cord that activate muscles. As muscles stop working, sufferers lose the ability to speak, walk and even cough, but their minds remain alert, horribly aware of the spreading paralysis. No one knows what causes the disease, and most patients die when their breathing fails. By late last year, with Willie unable to speak and finding it so hard to swallow she could barely eat, the couple were willing to try anything.
In March, after friends organized a fund-raiser, the Terpstras traveled to Chaoyang hospital in Beijing. There, under local anesthetic, Willie had two holes drilled into the front of her head and about two million cells injected into her brain tissue. Performing the 50-min. operation was neurosurgeon Huang Hongyun, who believes the cells he uses - often wrongly described as stem cells but actually olfactory ensheathing glial cells (oegs) taken from the noses of aborted second-trimester fetuses - can help restore some of the functions stolen by MND and spinal-cord damage. That same day, surrounded by her ecstatic family, Willie swallowed properly for the first time in months.
Several hundred other people with MND and damaged spinal cords have, like Willie - the first person from Australia or New Zealand known to have been treated by Huang - paid around $20,000 to undergo the procedure, while hundreds more are on Huang's waiting list. They're undeterred by controversy not just over the cost of the surgery and the source of the cells (the Terpstras say at least something good is coming from the terminations) but over the science underpinning the treatment. There's some evidence in animal studies that oegs, which are key helper cells in the nose, can also help spinal-cord nerve fibers regenerate. But Huang's use of the unproven procedure on human beings, without using control groups as comparisons or studying patients' progress after treatment, disturbs scientists and MND and paralysis support groups around the world.
"We simply don't know if it's helping people, doing nothing or killing them," says Brian Dickie, research director at the British MND Association, which, like its Australian counterpart, urges sufferers to be cautious. "People are going over there and having God knows what put into them, and then being packed off home with no follow-up." Willie and Rein have received hundreds of messages from well-wishers but had no contact with Huang's team since their return, except for an mri scan sent to them with an e-mail in Mandarin.
Huang's presentation at a conference in Britain last year was not reassuring, says Dickie. The surgeon claimed to have operated on dozens of MND patients, Dickie notes, "but only presented sketchy information on eight." Anecdotal reports from patients returning from China, meanwhile, speak of seemingly impressive improvements. While Willie Terpstra hasn't regained her speech, her headaches and cramps are gone, and she comfortably drinks fruit juice while communicating with visitors on her electronic typewriter. "He said, 'I know it works, but I don't know how or why or for how long,'" says Rein of Huang. "But at least it will give Willie a better quality of life for some time." For people robbed of movement, says Gary Allsop, a director of Spinal Cure Australia who's been in a wheelchair since an accident 16 years ago, even small gains can be miracles. "If someone told me they had got the use of their hands back, I would say, Sign me up."
MND is so awful, says Professor Perry Bartlett, director of the Queensland Brain Institute, "that the desire to do something in this area is stupendous. But there are lots of people willing to satisfy that demand in a way that doesn't fit with the rigor of clinical trials or experimental data." Given the number of people being operated on by Huang, "the real tragedy," says Bartlett, "is that there may be something in it but you would never be able to decipher it. And if there isn't, then we should be able to put it to bed." Huang wasn't available to speak to Time, but told the magazine's Asia edition last year that his operation was "safe, doable and effective." The world's first clinical trial of patient-derived oegs on human spinal-cord injuries, whose first results are due to be published this year, is led by Professor Alan Mackay-Sim, of Queensland's Griffith University. He says too many questions about Huang's procedure - even questions as basic as exactly what cells are used - remain. "These are extremely vulnerable people, and he's doing procedures that have no real scientific justification." Dr. Ann Turnley, of the University of Melbourne's Centre for Neuroscience, suspects that in some cases where patients have shown improvement, what's really at work is the placebo effect. "If it's happening within a few hours," she says, "there's no way it can be anything to do with the transplant."
Melbourne man Craig Lattin was a fit 34-year-old when he developed a limp and was diagnosed with MND. Two and a half years later, he's in a wheelchair. He says he wouldn't try Huang's procedure - "it's too early to know exactly what you're doing, quite apart from the ethical issues" - but believes the doctor should continue his work: "Every adult should make their own choice. And even if there's limited success, it will teach us something." At their home in Rotorua, filled with pets and photos, Rein says he'd hoped for more from the surgery, but is grateful for any more time he and Willie have together. "I had nothing else," Willie types. "And if I didn't do it, I would always wonder, what if?"