Jacob Trossman celebrated his bar mitzvah in Toronto last month together with his family and friends. In many ways, his was a typical Jewish coming of age ceremony. The bar mitzvah boy donned a tallit (prayer shawl) for the first time, prayers were uttered, and the Torah was read. However, there was one major way in which Jacob’s transition to Jewish adulthood was unique. Unable to move or speak, Jacob recited the blessings for his first aliyah to the Torah by blinking.

Afflicted since birth with Pelizaeus-Merzbacher disease (PMD), a degenerative central nervous system disorder, Jacob used a technology called a Blink Switch to activate a computer to play a recording of the blessings read before and after reading the Torah.

“A headband sits on Jake’s forehead, and that’s the part that captures the electrical impulses of his muscles. When he blinks, it’s detected by the device, and it communicates to a computer via Bluetooth. When the computer receives that signal from the device, it activates the recorded speech. In this case, it was the blessings for his bar mitzvah,” Dr. Tom Chau, senior scientist and vice president of research at Holland Bloorview Kids Rehabilitation Hospital, explained in an interview with the Canadian Jewish News about the technology developed at the hospital’s PRISM (Paediatric Rehabilitation Intelligent Systems Multidisciplinary) lab.

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There was never any question in Jacob’s parents’ minds that their son would have a bar mitzvah ceremony, despite the severe deterioration to his coordination and motor abilities caused by PMD, a disease that is related to multiple sclerosis and belongs to a group of gene-linked disorders known as the leukodystrophies. These diseases affect growth of the myelin sheath wrapped around and protecting the nerve fibers in the brain. PMD is inherited as an X-linked recessive trait, meaning that the affected individuals are males and their mothers are carriers of the genetic mutation. It is no more prevalent among the Jewish population than among other ethnic or racial groups.

“The only question was what form it would take,” Jacob’s mother Marcy White told The Times of Israel about his bar mitzvah.

Last summer, family friend Hannah Sandler, who was becoming a bat mitzvah herself, offered to learn to chant Jacob’s Torah portion, in addition to her own. The idea would be for her to record herself chanting Jacob’s portion and upload the file to a computer so that Jacob could activate it during his ceremony using a customized communication technology he controlled with slight movements of his head. Jacob and his family were touched by Hannah’s offer, and they set Jacob’s bar mitzvah for this past Monday, May 18.

But then Jacob became very ill late last fall and was hospitalized at The Hospital for Sick Children (referred to by locals as Sick Kids) for a month. He got sick again in January and had to return to the hospital, where he spent three weeks in the Intensive Care Unit.

Unable to move or speak, Jacob recited the blessings for his first aliyah to the Torah by blinking

“Jacob was having serious breathing issues, so the bar mitzvah was not top of our mind at that point,” White said.

Rabbi Adam Cutler of Beth Tzedec Congregation had been meeting with Jacob, who has liked learning Hebrew and Bible stories, in preparation for his bar mitzvah ceremony.

“Like all b’nai mitzvah celebrations, we were hopeful that the service would take place at our synagogue. But as the day approached and the likelihood of Jacob being well enough to celebrate at Beth Tzedec remained low, a decision was made to do the service at Sick Kids, where Jacob was a patient,” Cutler told The Times of Israel.

White and her husband Andrew Trossman were not initially pleased about having the ceremony at the hospital and thought about postponing it. However, the family agreed to hold it in a bright, glass-walled event room in Sick Kids’ new research tower after Jacob’s doctors told them not to push the milestone off.

“They told us, ‘You don’t know what the future holds. This will be the time around Jacob’s 13th birthday, so do it now,’” White said.

As the date approached, technicians from Holland Bloorview came to Sick Kids to train Jacob, who had previously been able to activate a communication system pre-programmed into an iPod with slight movements of his cheek, to use the new Blink Switch. It was also decided that Hannah, rather than recording Jacob’s Torah portion, would chant it in person at the ceremony. Jacob’s 10-year-old twin sisters Sierra and Jamie prepared to deliver a d’var Torah, a speech about their brother’s Torah portion.

“Our philosophy at Beth Tzedec is to accept every child as they are and to challenge them Jewishly. For many typical kids, they participate in our bar/bat Mitzvah program, learn to read Torah and Haftarah and write a d’var Torah. For others, that approach is not appropriate. We want to make sure that each child is challenged, learns, and feels good about the process leading up to their becoming a Jewish adult. While Jacob’s service was on the one hand unique, it was at the same time exactly what we do for every child who is approaching bar or bat mitzvah,” said Cutler.

White said she was “very concerned” about the bar mitzvah as May 18 grew nearer. What kept her up at night were not the usual worries about catering, seating plans or decorations.

“Would he be able to sit through the whole ceremony and the party? Would he need to be suctioned? Would he turn blue?” she worried.

‘Jacob has taught them to slow down. He’s taught them to be present in the moment with him’

Jacob, who had attended a regular public school with the help of two special needs assistants and a nurse until his recent bout of illness, was having breathing troubles two days before the ceremony and spent all day in bed the next day. It turns out Jacob had been conserving his energy, and on the day of his bar mitzvah, he was “perfect,” according to his mother.

“Because of Jacob’s health, we were concerned that he may lack the stamina to sit through a full service. It was, as it turned out, an incorrect assumption. Jacob was full of energy for the service and the party to follow,” said Cutler.

White, who has written a book about Jacob and started a foundation to further PMD research and patient advocacy, asked each of the 120 guests (all whom Jacob personally knew) to contribute to a special book she was putting together for her son. She asked them to write what they had learned from Jacob over the years.

People noted many things about Jacob, including his wonderful sense of humor and his constant smile despite the pain and challenges he has faced.

“One of the main things people expressed was that Jacob has taught them to slow down. He’s taught them to be present in the moment with him,” White said.