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In the summer, author Mitch Albom (middle) reached out to Marc and Emily Quayle to speak about his experiences with her for his book tour.

ROCKY RIVER

Author Mitch Albom came to Magnificat High School on Jan. 8 to raise awareness about Diffuse Intrinsic Pontine Gliomas, which is the focus of his new book, “Finding Chika.”

 An overflowing crowd of about 400 people heard Albom discuss the fatal pediatric brain tumor and how it impacted him, his wife and Chika, a 5-year-old girl from Haiti the couple tried for years to help.

“I am here to talk about a girl who is not here and cannot be here and there’s an empty chair at our dinner table,” he said during his talk about Chika, whom he met after the 2010 Haiti earthquake that took 300,000 lives. Chika suffered and died from DIPG (Diffuse Intrinsic Pontine Glioma), which Albom called a four-letter word for death.

Albom met Chika at his orphanage in Port-au-Prince, which he took over after an earthquake nearly destroyed it. He reminisced about her fiery personality and how she taught him and his wife, Janine Sabino, seven lessons in life, one for each year she was alive, eventually bringing the room and himself to tears.

Fans and book enthusiasts alike got a chance to meet Albom and have their book signed before and after the hourlong event. Everyone who purchased a ticket before the event also got a free copy of Albom’s book. Those who bought tickets at the door were also able to buy one.

“I think it encourages people to feel like they’re not alone in their suffering no matter what they’re going through,” said Linda Hardman, a 30-year Rocky River resident. “There’s people with experiences that can help teach you something if you’re struggling.”

Smiles for Sophie Forever, an organization dedicated to fighting the pediatric brain tumor, hosted the event. The pediatric brain tumor is located in the pons, which controls essential body functions like heartbeat, breathing and eyesight, according to DefeatDIPG.org.

“It’s in some ways similar to ALS (commonly known as Lou Gehrig’s Disease), but it’s a lot quicker,” said Emily Quayle of Avon Lake, president and co-founder of Smiles for Sophie Forever. “It starts pressing on all different kinds of nerves, they can’t walk, they can’t smile, they can’t talk. It’s like they’re trapped in their head until the end.”

Every year, the tumor affects 10,000 children between the ages of 5 and 10 worldwide. Those diagnosed with it have less than a 1% chance of survival according to information provided by Smiles for Sophie Forever.

“Because of the location of the tumor, it’s extremely difficult to treat,” Quayle said. “It’s like throwing sand into grass and trying to clean it all up.”

The organization began after Quayle and her husband, Marc, lost their daughter Sophie to the ailment on Oct. 6, 2007. Since then, she said, they have granted over $1 million in support of families affected by the tumor, spreading awareness and supporting St. Jude Children’s Research Hospital, where Sophie was treated.

Albom is a bestselling author, screenwriter, playwright and nationally syndicated columnist. He is best known for his books: “The Five People You Meet in Heaven,” and “Tuesdays with Morrie,” which were both turned into acclaimed TV movies, one of which was produced by Oprah Winfrey.

“We are so grateful for Mitch to come and speak here,” Quayle said. “It’s one thing to do what we do as a mom and pop organization with no celebrity status, but I think it’s inspiring to know there’s someone who is well known to jump on board for a cause like this. It kind of gives you hope.”

Albom’s presentation, filled with photos and videos of his time with Chika, ended with a reminder to the audience.

“What we carry defines who we are, and the effort we make is our legacy,” he said urging those in attendance to help out in any way they could against this tumor.

Contact this reporter at akamczyc@westlifenews.com or 440-871-5797.

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