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Instead, in December, they requested two million dollars on the Internet fund-raising platform Go Fund Me.“We need your help,” Gabi wrote on their campaign page, which included pleas in Hebrew, Russian, and Spanish.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. Frustrated with the system, the Ilinetskys decided to go outside it.The procedure, one of several gene-therapy protocols in development for Canavan patients, has been effective in rodents; it is awaiting funding and F. “We thought maybe we could buy a few thousand lottery tickets,” Zohar said, grimly.Until then, doctors had assured the Ilinetskys that the babies were healthy. The Ilinetskys buy family insurance through the Kaiser Permanente network, and it costs them about fifteen hundred dollars a month.
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. Leone, meanwhile, needs .5 million to fund a clinical trial of her treatment for a group of Canavan children, potentially including Yoel and Yael.Go Fund Me was officially founded, in 2010, by Andy Ballester and Brad Damphousse, who had met at a text-messaging startup.Since then, the company has hosted more than two million fund-raising campaigns in nineteen countries, joining other platforms, such as Indiegogo and Kickstarter.At four months, he was given a diagnosis of Canavan disease, which causes rapid degeneration of the brain and, almost always, death in childhood. “After shock,” Zohar said, “comes depression.”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.Signals cross—Yoel had his first seizure at ten weeks—and motor control decays.