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Child's 'Chocolate Bar' Book Raises Money for Disease Research

When Jonah Pournazarian was 6 months old, he was diagnosed with Glycogen Storage Disease, a rare liver disease.

Jonah, now 8, continues to suffer from the effects of GSD. He drinks cornstarch every two hours to keep his blood sugar from dropping to life-threating levels.

“He can have a seizure, go into a coma and die,” said Lora Pournazarian, Jonah’s mother.

There is no cure for this disease.

But Jonah's friend Dylan Siegel, 7, had an idea to help him -- he'd write a book.

Dylan authored the book "Chocolate Bar," which has raised over $400,000 in sales for the Glycogen Storage Disease research program at the University of Florida since November 2013. His goal is to reach a million dollars.

Jonah told Dylan about his condition when they first met in preschool.

“I heard that Jonah had a disease, and then I felt bad for him that he had to drink cornstarch every day and always check his blood,” Dylan said. “So, then I wrote a book to help him stop doing all this bad stuff [drinking cornstarch and checking blood] every day.”

Dylan’s mother Debra Siegel, said Dylan always makes up words and phrases, and his phrase “chocolate bar," which the book is named after, means something is “awesome.” The book is about his favorite things.

Siegel said her son was serious about writing the book and wouldn’t give up until it was published.

Dylan was awarded the first-ever Young Philanthropy Award from UF Friday night.

“A lot of times, kids come up with ideas, and then the next minute they’re on to something else," Siegel said. "So we kind of thought that’s what it was at first, and then he just stayed on top of that. We love it, and we’re proud, and we’re honored to be a part of it.”

Paul is a reporter for WUFT News who may be contacted by calling 352-392-6397 or emailing news @wuft.org