What Odone and her husband, Augusto, achieved-recounted with great accuracy in the movie “Lorenzo’s Oil”-was astonishing, a feat of intellectual levitation. Any of us could imagine ourselves quitting a job to take care of a dying child, selling our house to meet the bills, even traveling the globe in search of a cure. And if there were no cure, most of us would eventually bow to that fact. But the Odones, by refusing to accept that Lorenzo’s condition was progressive, fatal and incurable, changed that reality. Augusto-charming and forceful, with a dense but not impenetrable Italian accent-was an economist with the World Bank in Washington. Michaela-precise, intense, reserved-was an editor. Neither knew anything at all about the field they had to master, human lipid metabolism. They found articles in obscure foreign journals, convened the first world conference of ALD experts and then, with a treatment in mind, scoured the world for a company to produce the unique oil they needed to test their theory. And the proof they were right lies on his bed in their own home, refuting with every heartbeat the lie that there are limits to the power of love.

But Lorenzo’s story doesn’t end where the movie does. The work begun by the Odones continues, through them and others. The therapy they pioneered-a dietary supplement based on an extract of rapeseed and other vegetable oils-is being tested now in patients around the world. Croda Universal Ltd., the English company that makes the key ingredient in the oil, is studying how the same principle could be applied to treat related disorders such as MS. And the Odones have set themselves an even more ambitious goal for their next scientific coup: regenerating damaged neurons in the brain, the Holy Grail of neurology.

But they have come so far already! ALD is a complex disease. It is marked by abnormal blood levels of compounds known as VLCFAs, very-long-chain saturated fatty acids. Some level of VLCFAs is normal. An enzyme in the body creates them out of the harmless fats in the diet, and in healthy people any excess is broken down by the action of a second enzyme. ALD patients lack this second enzyme; in them, VLCFAs accumulate and destroy the myelin sheath that insulates nerve fibers, resulting in loss of vision, movement and speech, followed by death.

One solution is to supply the missing enzyme through a bone-marrow transplant of normal enzyme-producing cells. But this requires a close genetic match between donor and recipient, and very few patients have been so lucky. The Odones sought instead to cut off the VLCFAs at the source, where they are synthesized in the body. The enzyme that makes VLCFAs is in finite supply. If you could in effect keep the enzyme busy making harmless compounds, it wouldn’t make as much of the dangerous ones. And that’s what the Odones did. Lorenzo’s Oil consists of long-chain monounsaturated fats intended to monopolize the synthesizing enzyme. Biochemically, Lorenzo’s Oil is a great success. In a study run by Dr. Hugo Moser of the Kennedy Krieger Institute it has brought VLCFA levels under control in virtually all the 240 patients receiving it.

Clinically, however, the picture is more complicated. Some patients have done very well-like Richard and Ryan Carlson, brothers from Rocklin, Calif., who both have the genetic defect that results in ALD. Richard, suffering mild vision and learning problems, was diagnosed in 1987; his parents were warned that the next six months would be hellish. But he began taking Lorenzo’s Oil that same year and his condition stabilized; although his problems remain, he will graduate from high school this year. His brother, who had elevated VLCFA levels but no apparent symptoms, has been on the diet for three years and is fine. Of 61 patients who started Moser’s trial with high VLCFAs but no symptoms, Moser says, only eight have gotten sick. That sounds good, although without a control group it is impossible to say what a statistic like this means.

In patients with advanced symptoms, however, the results were not so encouraging. Most continued to decline. Moser suspects that while VLCFAs disappear from the blood quickly, they linger in the tissues. He also thinks the disease may have another component, perhaps immune-system involvement, which the oil does not address. And since myelin, once damaged, does not repair itself, patients rarely improve. After years of therapy, Lorenzo himself is still almost totally immobile and communicates mostly with blinks and finger wriggling.

Which explains the importance of the Odones’ new effort, the Myelin Project-a private research effort directed specifically at curing demyelinating diseases. Augusto and Michaela still exchange ideas with researchers, but their main role now is getting money out to a handful of scientists around the world. The Myelin Project has a unique philanthropic bent. Board members are required to have a relative with ALD, MS or a related condition. The project funds only applied research with direct potential for a cure. Researchers who receive grants are required to share all their findings immediately, even at the risk of having to share their Nobel Prize in the future. But if they need $20,000 for a piece of equipment, Augusto puts a check in the mail within weeks. They have raised around $1 million so far-mostly in Augusto’s native Italy-and hope the movie will bring in much more. The project is pinning its hopes for now on a technique for implanting certain fetal cells, the precursors to myelin-producing cells, in the spinal cords of victims. Experiments in dogs and rats have been encouraging. Odone hopes to have the first human trials this year. “We are not a foundation,” Odone says. “A foundation is something permanent. I hope we will achieve our objectives in a relatively short time-and then we will have a big party and disband.”

And meanwhile, the object and end of all this effort, all this love, lies on his bed. He is never alone. Nurses feed him and suction from his mouth the mucus he cannot bring up himself. His mother still reads to him, adult books now, and she talks, but not about the pain of the last eight years. “I talk about his golden childhood,” Michaela says, “or about what we did yesterday, or today, or tomorrow.” Someday soon he will see the film of his life; director George Miller is editing a version for him that will disguise how close he came to dying. And then he will know that the world knows what his mother has always believed: he is the most important boy in the world.