Yitzi Hurwitz has plenty of reasons not to have a sense of humor.
There’s nothing funny about a young, energetic husband, father of seven and rabbi being struck with amyotrophic lateral sclerosis (ALS), the crippling and often fatal neurodegenerative disease best known for afflicting baseball great Lou Gehrig and renowned physicist Stephen Hawking, and which has, so far, outmaneuvered scientists searching for a cure.
So it was surprising, funny and heartwarming when the automated voice of Hurwitz’s Tobii eye-tracking software spoke up, saying, “It could only be Jared,” as soon as this reporter walked into his bedroom for an interview.
Hurwitz, 43, a native Brooklynite, and his wife, Dina, used to serve as the Chabad Shluchim in Temecula. They had a small but dedicated congregation, with Hurwitz serving as chazzan and regularly playing guitar at shul get-togethers; he also wrote music in addition to his full-time duties of raising money, growing and supporting his congregation, and raising a family.
But in 2013, everything changed. Not knowing why he was experiencing some unusual and alarming symptoms, such as slurred speech, he sought medical assistance. When doctors eventually diagnosed his ALS, he and Dina knew that would make running their Chabad impossible.
In order to get the best possible medical care, the family left their post in Temecula in summer 2013 and moved to an apartment near Hancock Park in Los Angeles, where he lives now and can receive full-time care while surrounded by a large Jewish community. While he could still make trips to Temecula, though, Hurwitz was able to acquire one last big item for his congregation, raising $45,000 for a scribe to write a Torah for the Chabad of Temecula — its first.
“He said, ‘I know I’m in trouble, and I know it’s going to get bad, but I always wanted to write a sefer Torah for the people of Temecula,’ ” said Shmuel Fogelman, a friend who helps administer the Hurwitz Family Fund along with a small group of local rabbis that has supported Hurwitz since his diagnosis.
Hurwitz raised the funds needed for the Torah, even as his voice disappeared and it became nearly impossible for him to move his facial muscles. By the time his community held its Torah-induction celebration, in March 2014, walking was difficult for Hurwitz — everything was difficult — but he was able to inscribe the culminating letter of the Torah.
“We were busy trying to take care of him, and he was busy trying to take care of Temecula,” Fogelman said. “All of his energy goes into inspiring other people. Every ounce of the energy he has.”
These days, Hurwitz is completely paralyzed, relying on feeding tubes to eat and the remarkable (and expensive) Tobii software to communicate. To pay for his medications and full-time home medical care, the family needs between $12,000 and $15,000 each month beyond what’s covered by private and government insurance — not to mention money for rent, food and every other expense involved with supporting a large Orthodox Jewish family.
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