The leafy streets of Malvern, a suburb of Melbourne, Australia, are not usually filled with singing or loud displays of celebration. But on a Sunday morning in early August, 600 people from across Melbourne’s diverse Jewish community changed that, dancing behind a boy in his walking frame, his father walking beside him under a canopy, carrying a newly completed Torah scroll. The crowds stretched for blocks.
This was, after all, Mendy Cooper’s bar mitzvah.
Mendy Cooper was born with Angelman syndrome, a rare genetic disorder that leaves him nonverbal, affects his balance and mobility, but is often paired with a disposition marked by near-constant smiling and laughter. For 13 years, his parents, Rabbi Reuvi and Menucha Cooper of Chabad-Lubavitch of Malvern, had wondered what this special day would hold for him. On August 2 they got their answer.
“As a mother, watching my son surrounded by his family, friends and the entire community around him, I was overcome by what a community can accomplish when we believe in a child and the power of his neshamah,” says Menucha Cooper.
The Diagnosis
Cooper and her husband had been married for eight years and already had three children by the time Mendy came around. The pregnancy was normal, and his birth was uneventful. The only indication of what was to come came from a throwaway comment during an ordinary two-month checkup, where the nurse noted that Mendy had a restlessness, a way of moving that didn’t quite match other babies his age.
“When he was six months old, our family flew to Israel to visit our relatives,” remembers Cooper, “and when Mendy was placed alongside a cousin close in age, the differences in their development were impossible to ignore. As soon as we landed back in Australia, we booked an appointment with the pediatrician to get to the bottom of what was going on.”
The next two months were tense and challenging. The first doctor they visited delicately told the Coopers that Mendy might be different from their other children and suggested they get him genetically tested. When he was seven months old, they finally got the diagnosis and a name for what they had been noticing: Angelman syndrome.
The doctor told them he had never seen such a case before and cautioned them not to look it up online. They did anyway. What they found terrified them.
Angelman syndrome is caused by the loss of a single gene, UBE3A, and it results in severe to profound intellectual disability, absent speech and impaired motor function, along with a variable behavioral profile that includes sleep disturbances, hyperactivity, and excessive smiling and laughing. Many children with the syndrome also develop epilepsy, alongside scoliosis and visual impairments.
It’s also rare. As of 2019, researchers estimated the total number of people living with Angelman syndrome in Australia at just 428. For a family hearing the diagnosis for the first time, it meant there was almost nowhere to turn for someone else who had lived it.
“Very early on, we discussed it and said we have a choice,” Cooper says. “Either we can live through the prism of Angelman and all the hardships that come with it, or see Mendy for the blessing that he is and give him every opportunity to be one of the children.”
They chose the second option and kept choosing it, through the countless tough days and nights that have come over the years, the daily battles to ensure that he is seen for the bright and proudly young Jewish man that he is.
“We had to set an example for others in the community on how to interact with him,” she says. “Not to treat him as a nebach, hidden and not included. We thank G‑d every day that we have the strength to look at Mendy as a gift from Above.”
None of it, Cooper adds, has been simple. Mendy lives with epilepsy and is fed through a feeding tube. He travels to school in a modified car; sits in a specially fitted chair and bed at home; and is accompanied throughout the day by a dedicated aide. Mendy’s many therapies, medications and appointments dictate the family’s calendar.
The hardest moments come when Mendy is in pain and, being non-verbal, has no way to explain what’s wrong. On one occasion, he managed to indicate through his eye-gaze device that his teeth were bothering him. The earliest dentist appointment was two weeks away. Cooper pushed, and an earlier slot opened up that very day, which showed the cause of his distress.
“It was a real breakthrough,” she says, “that he was able to tell us what was wrong, and that he knew we heard him.”
A Neshamah From a Higher Place
The framework for choosing to give Mendy every opportunity to live like every other child, Cooper says, came from a teaching of the Rebbe—Rabbi Menachem M. Schneerson, of righteous memory—who described children with disabilities as special souls entrusted with an unusually elevated mission.
“From the way the Rebbe spoke about people living with disabilities, we know Mendy’s neshamah comes from a very high place, much higher than ours,” she says. “I knew if I wanted people to understand who he was, I needed to show how people can and should interact with him. That’s why I go and speak, and share our story on social media (where she has more than 30,000 followers; her handle is @magicalmendy). My community work has certainly changed, but the way I look at it, I am the Rebbe’s shlucha to the special-needs community, to show a Jewish experience and perspective on how these special souls can live full Jewish lives.”
That conviction faced a real test when it came time for Mendy to start school.
Mendy had started at a school for children with disabilities, but his parents came to believe he needed a Jewish environment. Additionally, Mendy thrives on being in the center of the action, and the quiet of the non-verbal classroom wasn’t his style.
Rather than enroll him in a program built around his diagnosis, the Coopers worked with the staff at Yeshivah College—Chabad’s educational institution in Melbourne—to ensure Mendy could go to school alongside children from his own community.
“It’s hard to explain how a nonverbal boy in a wheelchair is clever and with it and loves being among his friends,” Cooper says. “He understands. He processes. He’s switched on.”
She gives effusive praise to the school, the staff, and in particular his classmates, for how much he is included and loves going to school every day. He studies alongside them in class, and they make sure he is able to participate in recess. At the school’s annual sports day, his friends run beside his wheelchair, and at their own bar mitzvahs, they pull him into the dancing. On Purim, gift bags of mishloach manot show up for him, the same as everyone else.
“Parents in his class have told me what Mendy being there has taught the children about kindness and empathy in a way that can’t be studied in a textbook,” Cooper says. “He really is one of the gang.”
A Bar Mitzvah to Fit Mendy
For nearly a decade, Cooper had carried the hope to commission a Sefer Torah to dedicate at her son’s bar mitzvah.
“Mendy has taught the joy and beauty of Torah to so many,” she explains. “He embodies the meaning of simchat hachaim [the “joy for life”] and has had such a profound impact on so many in our community, and across the world, that this always seemed to be the best way to mark his special milestone. He may not be able to read his Torah portion like other children, but this is a way to show that the Torah is his also, as much as it belongs to any other Jewish person.”
The bottom line?
“We didn’t want to fit Mendy into a traditional bar mitzvah. We wanted the bar mitzvah to fit Mendy.”
More than 200 people bought into the Cooper’s vision, dedicating letters, chapters and full parshiyot of the scroll to participate in the special celebration. The Torah’s crown was dedicated by the Coopers in tribute to Mendy’s four siblings.
“The way they love and accept him for who he is is just amazing. They are just incredible cheerleaders for him and support for us,” says Cooper. “They are Mendy’s crowning glory, so we dedicated it to them.”
On Sunday, Aug. 2, the day after he turned 13, Mendy walked beneath a chuppah using his walker while his father carried the newly finished Torah beside him and his mother walked at his side. Hundreds followed through the streets of Malvern, singing, toward the Chabad center where Mendy has touched countless lives.
There, the congregation’s other Torah scrolls were brought out to greet the new one, a custom typically reserved for such arrivals. As Rabbi Cooper placed the scroll into the ark, its new home, the packed crowd sang the solemn melody of Rabbi Schneur Zalman of Liadi, the founder of Chabad-Lubavitch, as Mendy watched and listened with pride.
“In that moment, I was overcome with emotion, watching this special boy surrounded by his friends and family, and the community that came together to celebrate his moment,” reflects Cooper.
Later that evening, they had a bar mitzvah party for family and friends. Mendy’s grandfather read the Rebbe’s letter to bar mitzvah boys, while his brothers shared a Chassidic discourse tied to the celebration of a new Torah. Mendy himself, communicating through an eye-gaze device, delivered a speech on the enduring nature of Torah for the enraptured audience.
A video played for the crowd carried the teaching at the heart of the day: A Torah scroll is invalid if even a single letter is missing or improperly formed. Every letter matters. For a room full of people who had spent 13 years learning to see Mendy’s worth in full, the message did not need much explaining.
Guests who had never before attended a Siyum Sefer Torah told Cooper afterward that they couldn’t imagine a more fitting way to mark a bar mitzvah. Other parents of children with disabilities told her the day had given them hope, watching hundreds turn out for a boy like Mendy, in full support and celebration.
Weeks later, Cooper is still on a high.
“We dreamed of this day for 10 years, and it exceeded all our expectations,” she says. “Seeing how many people came together, from our community, from the broader Jewish community, from the special-needs community, in real joy and meaningful celebration, it felt holy—it felt like Moshiach times.”
Mazal Tov to Mendy!