Home News Canada Young man with disabilities dies after beating the odds for 21 years

Young man with disabilities dies after beating the odds for 21 years

Jacob Schwartz, centre, poses for a picture with his sister Beverly, left, and his brother Ben.

Among the many interpretations of the patriarch Jacob’s dream of a ladder that reached to Heaven, one strikes a chord when it came to the life of Jacob Schwartz.

In Jacob’s dream, angels ascended and descended the ladder. Some sages have said that this meant that Jacob and his progeny had both an inheritance and obligations.

In similar fashion, Jacob Schwartz inherited his family’s drive and sunny disposition, and imparted a sense of duty to the thousands who crossed his path that life was worth living, even with a severe disability.

Furthering the link to the forefather, Jacob Schwartz was the namesake of the charity Jacob’s Ladder, the Canadian Foundation for Control of Neurodegenerative Disease, which, over 20 years, has raised more than $3 million for awareness, genetic testing, therapy and research into Canavan disease and six other disorders that are more prevalent among Ashkenazic Jews than other groups of people.


The charity covered the cost of screening for the diseases before the Ontario government started paying for genetic testing.

Schwartz died on Jan. 28 at Sunnybrook Hospital in Toronto, surrounded by his family. At 21 years old, he outlived the most optimistic predictions.

“We were told he would only live until age five,” his mother, Ellen Schwartz, told The CJN. Jacob Schwartz expressed a will to live “right to the last second. Even when his lungs had failed him, he was looking at us with love in his eyes. He didn’t want to go, but he knew it was his time. He was a fighter right to the end.”

Jacob William Schwartz was born in Toronto on May 17, 1997. He was just a few weeks old when his parents noticed something was wrong: his eyes didn’t seem to track and he had difficulty holding his head up.

Jacob Schwartz, centre, poses for a photo with his family.

He was four months old when he was diagnosed with Canavan disease. As Jacob’s Ladder explains, Canavan is a progressive, neurodegenerative disease that damages the brain’s nerve cells in early infancy, causing mental and physical disabilities.

Although Canavan disease may occur in any ethnic group, it affects those of eastern European Jewish ancestry more frequently. An estimated 2.5 per cent, or one in 40 individuals of Ashkenazic Jewish descent, is a carrier.

The gene that causes Canavan disease was identified in 1993. Now, those at risk may be screened with a simple blood test that determines, with more than 95 per cent certainty, whether they are carriers of the disease.

Schwartz could not walk, talk, eat, see or speak and needed one-on-one attention at all times. Even so, “Jakey,” as the family called him, had his favourite activities. His mother enumerated them:

Nobody cuddled like Jake. He loved connecting.
– Ellen Schwartz

“He loved people, swimming, music, the outdoors, boat rides, long walks, cuddling.

“Nobody cuddled like Jake. He loved connecting,” she added.

There was, however, nothing wrong with his hearing. As Schwartz’s standing-room only funeral on Jan. 31 was told, his love of music was legendary, and would lead to widened, fluttering eyes and his trademark high-wattage smile.

For his 20th birthday, friends and family wrote and recorded a song dedicated to adults with complex challenges. An imagining of what Schwartz would say if he could speak, it was titled, I Rise Above.

He had unconditional love for people, mourners heard, and a sense of humour that may have seemed mischievous, but was a balm of its own.

Often, “he would laugh at the worst times,” said Schwartz’s sister, Beverly. But his laugh managed to turn awkward or sad moments “into better times.”

The Schwartz family: Ellen, top from left, Jeff, Bevvy, Jacob and Ben. DARREN LEVANT PHOTO

“His smile made you feel like a million bucks,” eulogized Rabbi Tzvi Sytner of the Village Shul.

A huge Toronto Maple Leafs fan, Schwartz wore all manner of Leafs accessories and even met stars like Darryl Sittler, Eddie Shack and Johnny Bower.

His mother, meanwhile, was a whirlwind of activity. She and her husband Jeff founded Jacob’s Ladder in 1998 and rounded up business and community leaders, doctors, researchers and concerned parents to form its core. Each year, the organization gave an award to an outstanding scientist in the field of genetic research.

Ellen Schwartz also established Project Give Back, a program designed to inspire elementary students to be community-minded, develop empathy and build character.

His smile made you feel like a million bucks.
– Rabbi Tzvi Sytner

Amid all that, she found time to write two books inspired by her son: A Disabled Son Teaches His Mother About Courage; Hope and the Joy of Living Each Day to the Fullest; and Without One Word Spoken: 18 Life Lessons from Jacob.

She’s been honoured by the Israel Cancer Research Fund, Ve’ahavta and Aish Toronto. In 2016, she was presented with a Meritorious Service Decoration by then-governor genenal David Johnston.

A few years ago, Ellen Schwartz came up with the Jake Challenge fundraiser, which sells bracelets that encourage people to “Wear your own moral compass.” The bracelets sum up Jacob Schwartz’s three rules for living: appreciate everything and everyone, live in the moment and be positive.

“He did that every day, every hour, every second – every moment for 21 years,” his mother said, her voice choking, “and I’d love the world to follow his lead.”

Jacob Schwartz is survived by his mother Ellen, father Jeff, brother Ben, sister Beverly, his grandparents, Peter and Bonnie Levy, and a large extended family.