TORONTO — May 18 marked Jacob Trossman’s leap into manhood, and there wasn’t a dry eye in the room.
Surrounded by 120 family members and close friends, all of whom have been touched by Jacob in some way, the young man celebrated what is believed to be the first ever bar mitzvah ceremony at the Hospital for Sick Children.
Jacob has been at Sick Kids since January after spending three weeks in the ICU with a respiratory virus. He suffers from Pelizaeus-Merzbacher disease (PMD), a progressive central nervous system disorder in which co-ordination, motor abilities and intellectual function deteriorate, to the point where people with the condition can no longer move.
Until recently, Jacob used an iPod to communicate, which opened a whole world for him. It was programmed with several main categories and sub-categories that Jacob could activate with just a slight movement of his head.
However, Jacob can no longer move, so a new communication device, called a Blink Switch, was designed just for him.
“When it came time for Jacob to do the brachot before and after the Torah portion, I took his hand with the tallis to touch the Torah. At that point, Jacob would blink his eyes to activate a computer to recite the brachot,” said his mother, Marcy White.
Jacob Trossman is hoisted on his chair during celebratory dancing
He had help with the actual Torah reading from a special friend, Hannah Sandler, who recently celebrated her own bat mitzvah and wanted her bat mitzvah project to relate to Jacob.
“My very close friend Jacob was born with Pelizaeus-Merzbacher disease and is not able to communicate – at least, not with words,” Hannah said. “After my bat mitzvah, I learned Jacob’s portion and recorded it for him so he would be able to read from the Torah through my voice using a computer device.”
Dr. Tom Chau, senior scientist and vice-president of research at Holland Bloorview Kids Rehabilitation Hospital, elaborated on the workings of the Blink Switch: “The device that Jacob is using is based on the measurement of electrical activity of the muscles in the forehead area. When Jacob blinks, he needs to activate his eye muscles. The muscles are controlled by electrical impulses,” he said.
“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.”
PMD is a myelin disorder in the same family as multiple sclerosis and is inherited as an X-chromosome-linked recessive trait, meaning affected individuals are male, but the carriers are female. It affects about one in 100,000 babies born worldwide and is not limited to any particular demographic population.
“Jacob can’t talk, walk, or move but he can smile and laugh. His vocal chords are paralyzed in the medial position, so that means they can’t open fully, which makes breathing challenging. As well, they don’t close fully, which makes swallowing dangerous because he can’t protect his airway. But because they are in the middle position he can make sounds,” his mother said.
“Jacob’s simchah was a statement by him and his family of the importance of the inclusion of Jacob and other challenged members within our community,” said Rabbi Baruch Frydman-Kohl, spiritual leader of Beth Tzedec Congregation.
Rabbi Adam Cutler, Rabbi Frydman-Kohl's assocated at Beth Tzedec who worked hard to set up the celebration: “Jacob has already contributed so much to the world and given so much joy to people. His Hebrew name is Yaakov Natan which means 'Jacob gave.' At the bar mitzvah, I spoke about all the things that Jacob has given to the world, anticipating all the many things he will be able to give in future now that he is a bar mitzvah.”
Jacob is alert and aware of his surroundings and has a great sense of humour. As his friend Hannah said, “Right after the ceremony, I said, ‘Jacob you did a great job! Are you happy?’ and he blinked. Throughout the day, I went up to Jacob and I said, ‘This is your day, Jacob. Are you having fun?’ and he would blink. Jacob is an amazing boy, and he understands everything that’s going on.”
Jacob will be going home this month and will have 24-hour nursing care.