Leone, meanwhile, needs $3.5 million to fund a clinical trial of her treatment for a group of Canavan children, potentially including Yoel and Yael. They pay three thousand dollars a week for NeuroMovement, which is considered experimental and therefore isn’t covered by insurance. approval to enter Phase I trials.įor the Ilinetskys, the challenge was cost.
The procedure, one of several gene-therapy protocols in development for Canavan patients, has been effective in rodents it is awaiting funding and F.D.A. Leone’s team aims to replace the mutated gene in Canavan patients with a normal version, packaged in a special virus that “infects” primarily white-matter cells. Beyond the daily therapy, Zohar and Gabi have pinned their hopes on a gene-replacement treatment being developed by Paola Leone, a neuroscientist at Rowan University, in New Jersey. The Ilinetskys said that the therapy shows signs of success: Yael can reach out, grab toys, and do other things that many Canavan babies can’t, and Yoel seems more alert. Six days a week, Gabi drove the twins two hours across the Bay, from Concord to Marin County, for an hour and a half of treatment, and then drove back.
Through their own research, the Ilinetskys found a physical-therapy program called NeuroMovement, which purports to cultivate brain plasticity. Now they were facing the terminal brain decay of both kids. Until then, the Ilinetskys had thought of themselves as a couple with two children, one with special needs and one without. Testing showed that Yael had Canavan, too. But now the Ilinetskys worried about Yael. With Yoel, some signs had always been there: his precocious rolling, for example, came from spastic tensing in his muscles. The recessive gene for Canavan, as for the better-known Tay-Sachs disease, crops up most often in the Ashkenazi Jewish population, and Gabi and Zohar found that they were both carriers-meaning that any children they conceived would have a one-in-four chance of being born with the disease. He had to be vigilantly burped, because his digestive tract lacked normal muscle activity. Before long, a thickening agent had to be added to Yoel’s bottles, because his weakening swallow and gag reflexes made him prone to choking. Their intellectual development falls off they never learn to talk. Canavan babies typically lose the ability to hold their heads up. Signals cross-Yoel had his first seizure at ten weeks-and motor control decays. Infants born with Canavan seem normal at first, but they lack an enzyme crucial for the growth of white matter, the myelin layer that protects and connects neurons in the brain. “After shock,” Zohar said, “comes depression.” At four months, he was given a diagnosis of Canavan disease, which causes rapid degeneration of the brain and, almost always, death in childhood. Against the pediatricians’ counsel, Gabi demanded a referral to a specialist, and Yoel underwent an MRI and other tests. The Ilinetskys buy family insurance through the Kaiser Permanente network, and it costs them about fifteen hundred dollars a month. She went to a second pediatrician, and a third. Gabi took Yoel to the pediatrician, who told her not to worry, that Yoel seemed fine. Until then, doctors had assured the Ilinetskys that the babies were healthy. 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. Before long, his son did the most precocious thing an infant can and rolled over.
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. To their delight, Gabi gave birth to twins: a boy, a girl. “My friends now are waiting until thirty-five to start thinking about kids, but always we knew we were going to get married. “We’re old-school people,” Zohar told me recently. While dating, they would speak often about the parenting styles that they hoped to have. They met in Israel, where he grew up, and settled in the San Francisco Bay Area, her childhood home. Gabi: fastidious, attentive, academic, an early-education specialist who used to work at a preschool. Zohar: twenty-seven, confident, and voluble, a construction project manager proud of his work. This content can also be viewed on the site it originates from.įor 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.