It is an almost universal truth that children who have been sick most of their lives possess a wisdom and maturity beyond their years. Benito Agrelo, 15, possesses both ? and plenty of spunk to boot. When social workers arrived with five police cars and two ambulances at his Coral Springs, Florida, home, they planned to force the boy, who is dying of liver failure, to go to the hospital. But Benny, who has already undergone two liver transplants, told them he wanted to be left alone to live out whatever remained of his life in peace. The 1.57 m teenager, who weighs just 36 kg, kicked and screamed and even managed to knock out a windowpane with his elbow before being tied to a stretcher and loaded into an ambulance. At the hospital, he refused to have a biopsy or blood tests and spurned the anti-rejection drugs he was offered. Finally, after four days, a judge ruled that Benny could go home, where he can sleep late if he wants to, play Nintendo with some on the neighborhood children or read a good book.
At first glance, Benny’s story seems to be yet another case of a patient asserting his right to die when medicine can only prolong suffering. The twist is that Benny is still a child who can’t make weighty decisions on his own. If he were in his 70’s, the decision would seem like a victory. Benny, however, seems not only too young to die but also too young to want to.
The boy’s mother has made her peace with his decision, and the Florida judge also deemed him suitably mature to make the decision. But Benny’s doctors would like to buy him some more time. Perhaps, they argue, they could figure a way to vary the amount of the anti-rejection drugs he is taking so the side effects are not quite so miserable. There is also the possibility of yet another transplant. The chances he could survive a year after a third operation, however, are generally considered to be less than 50%. “We proposed trying to rescue his liver,” says Dr. Andreas Tzakis, head of liver transplantation at the University of Miami. “He refused.” One thing is sure: as Benny loses weight, and his skin turns ever deeper shades of yellow, his chances dim with each passing day.
