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Charity helps kids who need drugs outside OHIP

The Canadian Jewish News, January 27, 2012

TORONTO — Aaron Maresky was only seven years old when he was diagnosed with the painful gastrointestinal (GI) disease called Crohn’s.

Arron Maresky

“He couldn’t eat, he couldn’t drink, he had unbearable stomach pains,” said Mandy Maresky, Aaron’s mom.

Aaron, who had lost 30 pounds as a result of the chronic disease, spent the following three months in and out of the Hospital for Sick Children in Toronto while doctors tried to find a medication that would relieve his symptoms.

They found success with a class of drugs called biologics, which treat the symptoms of Crohn’s and other diseases.

As soon as Aaron began receiving infusions of Remicade, a drug that is not covered by OHIP and costs about $4,000 a month, his condition improved immediately.

“It was amazing. We started to think that maybe they had misdiagnosed him,” Maresky recalled.

Luckily, the Mareskys have insurance that covers the cost of the expensive drugs.

Maresky said her son, who went from being a “normal, very active” seven-year-old to a child who had to receive painful infusions each month, didn’t waste time feeling sorry for himself

During one of his frequent visits to SickKids, Aaron pulled some money from of his pocket – the allowance his mother had given him – handed it to a nurse, and asked her to give it to another family in need.

Giving money and gifts to other families in the GI clinic at SickKids during his monthly visits became a regular occurrence.

Maresky suspects Aaron had noticed the support he received from family and friends, as well as Chai Lifeline Canada, a non-profit organization that supports children with serious illness.

“Because Aaron saw what a difference this made to him, he wanted to give back and do the same for other children,” Maresky said.

“One day, he said, ‘Let’s just start our own charity.’ Basically, that’s how Aaron’s Apple was born.”

Aaron’s Apple, a registered Canadian charity under the auspices of Chai Lifeline Canada, was co-founded by Aaron – who is now a 10-year-old Grade 5 student at Associated Hebrew Schools Kimel campus – and his parents.

It collects funds to help Canadian families without insurance pay for drugs that OHIP doesn’t cover.

Maresky explained that Ontario residents who don’t have insurance and can’t afford the high drug costs can apply for assistance from the Trillium Drug Program. But, she added, the process to get approval could take months.

“When a child is very sick and wasting away and in a lot of pain, and they can’t go to school, they don’t have time to wait for approval. So with Aaron’s Apple, we raise money, and the money will be given directly to the families to bridge the gap,” Maresky explained.

“As soon as Trillium takes over, that’s when we step back. Sometimes they don’t get assistance, so we pay.”

To date, Aaron’s Apple has raised more than $50,000 and helped three families that were referred to the organization by SickKids.

She hopes the first annual Caring to the Core Gala will help raise upward of $100,000 to help more families.

Citytv reporter Galit Solomon and Gemini Award-nominated producer and television host Marshall Jay Kaplan will host the Feb. 11 gala, which will be held at Beth Emeth Bais Yehuda Synagogue.

The “adult-inspired” event will feature dinner, an open bar, entertainment, music and an auction, as well as a raffle to win a trip to the “Big Apple,” New York.

Aaron, who is now at a healthy weight, but still experiences “flare-ups” said he was “very excited” about the upcoming gala.

Aaron said he hopes the event will raise “a lot of money because there are always going to be families that need help.”

Maresky said Aaron’s Apple offers help for children suffering from all kinds of chronic illnesses, not just Crohn’s disease.

“We don’t want to turn anyone down… No child should suffer and not have access to what they need.”

Maresky said being a part of this charity helps her son and her family focus on something positive.

“He’s very involved. He’s an amazing kid. We’re just so proud of him. He’s so positive and he never complains.”