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The Globe and Mail

Parents fight son’s rare disease with research

The Schwartz family, from left: Bevvy, Ellen, Jacob, Jeff and Ben. Ellen and Jeff co-founded Jacob’s Ladder after Jacob was born with Canavan disease, a rare neurodegenerative disorder.

The Donors: Ellen and Jeff Schwartz

The Gift: Creating Jacob's Ladder

The Cause: The Canadian Foundation for Control of Neurodegenerative Disease

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When Ellen and Jeff Schwartz's son Jacob was born in 1997, he looked like a normal, healthy baby. But within weeks Jacob showed few signs of normal development and by the time he was four months old, doctors said he had Canavan disease, a rare neurodegenerative disorder that has left him immobile and unable to talk.

"As you can imagine, as parents being told this we were devastated," Ms. Schwartz recalled from the family's home in Toronto. The couple sought out extensive treatment for Jacob but soon decided to do something for others as well.

"We didn't want other families to have to go through this," said Ms. Schwartz, a former teacher who runs an educational program called Project Give Back. Her husband is founder of Consolidated Credit Counseling Services of Canada, Inc.

With the help of family and friends they started Jacob's Ladder, a charity to raise money for therapy and research into neurodegenerative diseases.

The organization has raised more than $2.5-million so far, which has gone to the Canadian Foundation for Control of Neurodegenerative Disease. The donations have helped finance screening for various diseases, research grants and a therapeutic pool.

One of the biggest fund-raising events is the group's annual "Jake's Gigantic Give" in November in Toronto where families select gifts to wrap and donate to charities (participating children can then select a gift for themselves).

Jacob is now 15 and while he continues to struggle, his spirits remain high, his mother said. "We just take it day by day," she added.

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"If he has a good day we have a good day. That's all you can do. He has really forced us to live that way and gained perspective on life. It's difficult but it has also been beautiful at the same time."

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