Tova Rabinovitz has dedicated her life to caring for Israel's most vulnerable children. For 26 years, she has worked at Aleh, a renowned organization that provides care for children with severe disabilities. But when her own son, Yaakov, was diagnosed with a rare and debilitating syndrome, her professional and personal worlds collided.
Yaakov, now six and a half years old, was born seemingly healthy. However, at just one-month-old, he began suffering from seizures. A series of devastating medical tests soon revealed that he had PIGA syndrome, an exceptionally rare disorder that affects only four children in Israel. He is blind, experiences severe epilepsy, and has profound cognitive and physical disabilities. He cannot communicate in any recognizable way, cannot turn over, and is largely immobile.
For Tova and her family, the initial shock was overwhelming. "At first, we thought he was just a regular child with epilepsy," she recalled. "But then we realized he was far more severely affected. The hardest moment for me was learning that he was blind. I don't know why, but that really broke me."
Yet over time, she embraced her new reality. "God prepared us for this," she said. "Having worked with children like Yaakov for so many years, we understood his needs. Today, we love him deeply, and he brings joy to our home, even though he can't express it the way other children do."
But war has introduced new fears into Tova's already complex reality. Yaakov is partially ventilated at night and constantly monitored for oxygen levels – all dependent on electricity. During the recent war, as Hezbollah threatened Israel's power grid, Tova feared that prolonged blackouts could be life-threatening. "If the power goes out for too long, we have no way to keep him alive at home," she explained.
Like many families of ventilated children, Tova reached out to Israel's Health Ministry, which had promised to provide backup generators to every ventilated patient. Yet, as of now, she has not received one. "We were told that if a blackout happened, hospitals wouldn't be able to accept us due to the war. So where do we go? What do we do?"
Beyond the immediate war concerns, the issue of power outages is also critical during winter, when storms frequently cause electricity disruptions. "It's not just about wartime," Tova noted. "Every winter, power outages occur due to harsh weather, and without a generator, we are left in the same dangerous situation."
Despite these challenges, Tova remains resilient. She continues her work at Aleh, where she teaches children with disabilities, providing them with stimulation, joy, and a sense of belonging.
The crisis facing ventilated children and their families has sparked concern among disability advocates. Rabbi Yehuda Marmorstein, CEO and Founder of Aleh, emphasized the urgency of the situation, stating: "At Aleh, we believe that every child, regardless of their medical complexity, deserves dignity, care, and the best possible quality of life. The challenges faced by families of ventilated children during wartime highlight the urgent need for life-saving resources. Ensuring uninterrupted power for these children is not a privilege – it is a fundamental necessity. We call upon decision-makers to act immediately and provide every ventilated patient with a backup generator to safeguard their well-being and survival."
Tova echoes this call for action, urging authorities to take responsibility for the lives of Israel's most vulnerable. "Every ventilated patient must receive a generator. These children rely on electricity to survive. It's not a luxury – it's a necessity."
For now, Tova and her family pray that the power stays on and that someone, somewhere, will listen before it's too late.
