For those who want their hearts broken, the story of Zohar and Gabi Ilinetsky, the parents of one-year-old twins, is a world to live inside. Zohar: twenty-seven, confident, and voluble, a construction project manager proud of his work. Gabi: fastidious, attentive, academic, an early-education specialist who used to work at a preschool. They met in Israel, where he grew up, and settled in the San Francisco Bay Area, her childhood home. While dating, they would speak often about the parenting styles that they hoped to have. “We’re old-school people,” Zohar told me recently. “My friends now are waiting until thirty-five to start thinking about kids, but always we knew we were going to get married. We knew we were going to have children.”

To their delight, Gabi gave birth to twins: a boy, a girl. They called the children Yoel and Yael. Zohar, who does not believe in baby talk, had long, one-sided conversations with his newborn children, in Hebrew; he thought that they could understand him, or soon would. Before long, his son did the most precocious thing an infant can and rolled over. It was while watching Yoel roll on the floor one day, chatting to him as if to a middle-aged man, that Zohar noticed a fleeting peculiarity in his son’s eyes, which seemed to flicker back and forth, like the pupils of somebody trying to read a subway-station sign through the window of a moving train.

Until then, doctors had assured the Ilinetskys that the babies were healthy. Gabi took Yoel to the pediatrician, who told her not to worry, that Yoel seemed fine. But Gabi worried. She went to a second pediatrician, and a third. The Ilinetskys buy family insurance through the Kaiser Permanente network, and it costs them about fifteen hundred dollars a month. Against the pediatricians’ counsel, Gabi demanded a referral to a specialist, and Yoel underwent an MRI and other tests. At four months, he was given a diagnosis of Canavan disease, which causes rapid degeneration of the brain and, almost always, death in childhood. For a while, his parents were in shock. “After shock,” Zohar said, “comes depression.”

…continue reading ‘The Perverse Logic of GoFundMe Health Care’

Image via Flickr  Some rights reserved by cibervlacho

See also: Crowdfunding Medical Bills, Bioethics Bulletin

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