Jordana and Richard Sontag were speeding toward Yale University, angry, desperate, ready to unleash, their secret weapon, which they had carefully loaded into the back of their Grand Cherokee. For a year, they had done everything in their power to save their dying baby boy, Jacob. The well-to-do young couple and relatives had donated more than $200,000 to Yale to underwrite experimental gene-therapy re- search aimed at curing the rare genetic disease that plagued Jacob. They had helped pay to bring two leading researchers from the other side of the world to Yale and to transport from a lab in Germany the precious concoction of healthy genes that might save their son and a dozen other dying children with Canavan disease. They had hired lawyers and enlisted United States Senators to lobby the medical oversight committees for approval of the experimental procedure.

And then they waited. Week after week, Yale officials assured them that the medicalschool's review committees and the governmental agencies would soon take action. But spring had given way to summer, and summer to fall, and still nothing. Jacob's adorable blond head had grown too heavy for him to hold up, and he had little control of his limbs, which hung at his sides, making him floppy like a rag doll.

In hopes of speeding the review, Jordana had assembled two notebooks full of records documenting the complete medical history of 1 and a half-year-old Jacob Ross Son- tag, starting with the first sonogram. The names ofall those committees and agencies that had to approve the experimental treatment made her head throb and at night turned her dreams dark and anxious: the Human Investigation Committee and Biological Safety Committee at Yale; the Recombinant DNA Advisory Committee at the National Institutes of Health; a staff review at the Food and Drug Administration. All had to say "yes" before the children could be treated.