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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.
Gabi took Yoel to the pediatrician, who told her not to worry, that Yoel seemed fine. Against the pediatricians’ counsel, Gabi demanded a referral to a specialist, and Yoel underwent an MRI and other tests.
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.
In late 2017, the Time’s Up Legal Defense Fund launched a campaign for victims of sexual assault, raising about twenty-five million dollars.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. They pay three thousand dollars a week for Neuro Movement, which is considered experimental and therefore isn’t covered by insurance.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.Through donations mostly from strangers, they raised more than a quarter of a million dollars in the first two months.Crowdfunding, or raising money without pursuing donors individually, isn’t new; consider bake sales, telethons, or the Salvation Army drum.