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LOS ANGELES — A first-grade boy who wanted to help his best friend with a rare liver disorder took action, raising tens of thousands of dollars for research.
Dylan Siegel's best friend Jonah Pournazarian often only eats a concoction of chicken soup and vegetables mixed with cornstarch through a feeding tube. Jonah's eating schedule is as strict as it is sensitive,and his parents wake up at 3:30 a.m. every morning to start his feeding, which must occur every three hours.
He suffers from glycogen storage disease type 1B, which stops his liver from producing glucose, and can cause dangerous effects. The condition affects one in 1 million people.
Dylan wanted to help find a cure for his friend's disorder by raising money for research. When he told his parents his aspiration one day, they suggested a bake sale or lemonade stand.
He had a different idea.
The next day, Dylan presented them a book: "Chocolate Bar," a phrase which Dylan uses synonymously with "awesome."
"It's about what's awesome to me," he said of the book.
He had drawn the illustrations and written the story. He was ready to print.
"After Dylan finished the pages he handed them to us and said ‘will you go make copies?' " Dylan's mother, Debra Siegel said. "He was really persistent and really passionate. We knew that we had to take action."
He also had a "chocolate bar" goal for the book: raise $1 million for research.
Friends and family helped get the book printed, and Whole Foods donated chocolate bars to go with the book.
"We were really, really thrilled to get behind this project because we knew it would send a message out to other children that they had power," Debra Siegel said. "It doesn't matter if you're 6 years old or 30, or 100, if you have a big idea and a big heart and you want to make something happen, you can do it."
The book was first sold at an event held by the school Dylan and Jonah attend. More than 200 books and 150 chocolate bars sold at the event, raking in $6,000. Since then, the project has raised more than $30,000 for research.
We were really, really thrilled to get behind this project because we knew it would send a message out to other children that they had power.
–Debra Siegel
"I felt good when my friend was trying to help me so I could get better and feel like other people," Jonah said. "It was so chocolate bar."
The money earned by the books and chocolate bars were donated to the Jonah Pournazarian GSD 1B Fund* at the University of Florida — an account the family says is purely for research, not for Jonah's care.
"Dylan has touched us so much. It's beautiful," Lora Pournazarian, Jonah's mother said. "It's so beautiful."
Dr. David Weinstein, director of the University of Florida's Glycogen Storage Disease Program, leads the team researching the disorder. In their research, the team has identified a missing gene associated with the disorder, and a carrier virus that can deliver the gene. They hope this discovery will lead them to a cure.
Until then, they are hoping to make patients more comfortable.
"If we could just allow people to sleep through the night, we will have made progress," Weinstein said.
*ksl.com has not verified the accuracy of the information provided with respect to the account nor does ksl.com assure that the monies deposited to the account will be applied for the benefit of the persons named as beneficiaries. If you are considering a deposit to the account you should consult your own advisors and otherwise proceed at your own risk.
