On the morning of Dec. 12, Danny Canal opened his eyes and saw the new Lava lamp in his Wheaton, Md., bedroom. He heard his little sister Rebecca, 11, snoring lightly in the bunk bed overhead. He smiled. “Just that sound—not hearing it for a long time—it was really good,” says Danny, 14. “I savored the moment.”
It had been a long time coming. After a nine-month stay in the hospital—which included an unprecedented third quadruple-organ transplant (stomach, liver, pancreas and small intestine)—Danny came home on Dec. 11. When he first fell ill six years ago, his most pressing need was for new intestines. But when none became available, their lack led to deterioration in a succession of other organs. Even as his health declined, Danny became a compelling advocate for reforming the nation’s organ-rationing system to give priority to the sickest patients, no matter how far from a donor they may be.
Indeed, federal officials pointed to Danny’s case last year when they proposed requiring the Richmond, Va.-based United Network for Organ Sharing to come up with a new, nationwide allocation system. (In October, Congress postponed action for a year for further study.) “Because of what’s happened to him, [Danny Canal is] changing the laws,” says Dr. Jorge Reyes of the Children’s Hospital of Pittsburgh.
Danny’s saga began in Merced, Calif., the day before Christmas 1992. Hearing a crash, his mother, Lori, now 33 and a homemaker, found 8-year-old Danny collapsed on the floor. By evening, doctors at the children’s hospital in Fresno had discovered that Danny’s large and small intestines, twisted into lifelessness, had to be removed. “I was a pediatric nurse and was always thankful that our children were healthy,” recalls Danny’s father, Army Sgt. Victor Canal, 37, a licensed practical nurse. “And now this.”
When Danny awoke the next morning—Christmas—with tubes in his mouth and nose, he scribbled a note to his parents: “I want to open my presents.” Told that his intestines had been removed and that he no longer would be able to eat, Danny cried only briefly and has never sought pity. Following Danny’s lead, the Canals resolved to live their lives as normally as possible, even as they hooked up their child to a feeding tube for 12 hours every night.
At school, only his teachers and the school nurse knew Danny’s condition. “I didn’t tell anyone what was wrong,” he says. He played in gym—though not contact sports—and sat with friends at lunch without eating. But he grew increasingly ill. In 1993 his pancreas failed, then his liver. In 1994, his gallbladder had to be removed. Doctors said only a multiple-organ transplant would save him; the Canals signed up Danny at Pittsburgh’s Children’s Hospital, one of the three U.S. pediatric transplant centers. And the Army posted Victor to the Walter Reed Army Medical Center in Washington, D.C., so that the family could be closer to Pittsburgh.
But the organs Danny needed did not come. By 1997, a frustrated Lori had tossed her transplant pager in a drawer. Danny was no longer able to conceal his jaundice from schoolmates, some of whom teased him. He finally composed a letter. “I am not contagious and I am as normal as anybody else,” he wrote. The missive turned many of his classmates into activists who, with their families, raised $20,000 for the Canals.
Then, last December, Lori received a call at the dentist’s office she managed. She raced to school to get Danny and, in tears, shouted through the halls that a donor had been found. With headlights flashing, the Canals drove to Pittsburgh in just 3½ hours. And waited. At 5:30 a.m. the next day, they learned that the donor’s pancreas was damaged and that another child had received the liver. “We just sat there,” says Victor. “We didn’t know what to think or say.”
Two months later, Danny, then 13, found his own words. In a moving speech at a rally in Washington, D.C., he decried an organ donation system that allows 4,200 people to die waiting for transplants each year. “Organs sorely needed by one person go to another person, possibly a very healthy person,” he said. (The system’s defenders counter that organs are good for a finite number of hours, and a national sharing system could ultimately hurt patients.)
By April, Danny lay in intensive care at Children’s Hospital in Pittsburgh—and Lori was desperate. Then one night another patient’s parents suggested that Lori add Danny’s name to a waiting list at Miami’s transplant center. “We had no idea we could do that,” she says. Three days later a medical transport team from Jackson Children’s Hospital flew Danny to Florida for what would be the first of three quadruple organ transplants over the next six weeks. (His body destroyed the intestines in the first set; the second set was damaged.) The Canals found themselves at the center of a controversy over whether one patient should receive so many organs. “We had an obligation to try to save Danny,” declares University of Miami’s Dr. Andreas Tzakis, who spent 22 hours fitting Danny with a 19-year-old’s organs in the final operation. “Besides, Danny has helped a lot of people get organs by demonstrating the critical need for organs.”
Though it will take at least a year to tell if the transplants will take, doctors are optimistic. Danny is delightedly eating (“It doesn’t matter what it is, I’ll eat it”), exercising his arms, dreaming of playing baseball and talking about becoming a gastroenterologist himself one day (“I’ve had a lot of the problems my patients might face”). Then the boy who has read Jurassic Park at least 10 times reconsiders. “Mom, can I be a paleontologist too?” he asks. Replies Lori Canal, thankfully: “You can be anything you want.”
Macon Morehouse in Wheaton, Md., Ellen Mazo in Pittsburgh and Grace Lim in Miami