“How can they sleep at night knowing the $20,000 they’re taking would otherwise go to help save children’s lives?”

That’s the refrain Elisabeth Linton kept repeating as she talked about her struggles with Woodbridge’s Paramount Eventspace during the fallout of the coronavirus pandemic and the drastic reorganization of society it’s caused.

It was on March 16 that the Sanfilippo Children’s Research Foundation (SCRF), the charity Linton runs in memory of her daughter, Elisa, who died of the rare syndrome a few years ago, learned that the gala they’d been planning for April 23 could no longer run because of COVID-19 and would have to be rescheduled.

However, when Linton called the Rowntree Dairy Road venue, which has been “nothing but amazing” helping the charity in the past, to discuss how to deal with the situation, she was given the terrible news.

In no uncertain terms, Linton was told that should SCRF not reschedule the event at the Paramount before Dec. 31, 2020, the charity, which she runs for free out of her basement, would not be refunded the $20,000 it paid Paramount’s owners, byPeterandPauls, as a down payment in 2019.

The problem for Linton, who lives in North York, is that the organization cannot run the event without the 100 or so volunteers who usually step up but won’t be available in the fall.

Furthermore, the star they had booked to perform, world-renowned singer and Canadian Hall of Fame member Andy Kim, won’t be available at that time.

“The main reason is Andy isn’t available this fall and they had the nerve to say, ‘Well, go get different entertainment,’ but the entire event revolves around Andy being available,” she added.

The charity’s other events throughout the year prohibit it from organizing the gala near the fall golf tournament, that could also be under threat due to the virus.

“I think it’s ridiculous – how can you do this to a small charity?” she questioned. “The character of an individual or an organization comes to light and shines when times get tough. Right now I’d say their character is far from shining. It is dark and gloomy.

“I don’t see why it matters whether we book it Dec. 31 or three months later in April. While everyone else seems to be helping one another out, we have them not being fair to us.”

Linton says the charity, which commits 96 cents for each dollar raised to research, has raised $8 million to help find a cure for the disease, from which those afflicted usually die by age 15.

Elisa died at 22 in 2016 from Sanfilippo syndrome, a disease that affects one in every 70,000 children with a regressive neurological condition sometimes referred to as “childhood Alzheimer’s,” causing children to lose the ability to walk, talk and eat around 12.

There are currently no treatments or cures for the syndrome.

In this file photo, 10 year old Elisa Linton watches the rest of the family training for Toronto Marathon on Oct. 14, 2004. Hans Deryk

If Paramount does return the money, it will go toward a $200,000 commitment SCRF made to Dr. Alexey Pshezhetski at CHU Sainte-Justine children’s hospital in Montreal, which is attempting to complete research to get approval for clinical trials to pass a new gene-therapy drug.

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Linton believes she’s spent about $500,000 with Paramount in the past, and the gala usually raises between $200,000 and $250,000 for the charity annually.

In the past, the charity has raised money for SickKids Hospital in Toronto for equipment that helps the entire rare disease community at the hospital.

Calls for comment to byPeterandPauls, which owns event spaces around the region, including Paramount, were not returned at the time of publication.

This is not the first complaint against byPeterandPauls since the pandemic broke out. A couple planning for their wedding at King’s The Manor also complained to CBC Toronto, before the company backed off and allowed them to reschedule for the same date next year.