How chocolate bar!
With the pressures of learning how to read and adjusting to elementary school, 6-year-old Dylan Siegel is juggling a lot more on his plate. Siegel’s best friend Jonah Pournazarian, 7, has been diagnosed with glycogen storage disease type 1B. It’s a rare liver disorder that doesn’t have a cure. The two best friends live in Los Angeles.
Instead of spending his money on comics, action figures or candy, Dylan decided to raise money and help his ailing friend Jonah. In an interview with ABCNews.com, Dylan’s father David Siegel said that they wanted to set up a lemonade stand and even more, “He looked at us and said, ‘I want to write a book.'”
Dylan created a 16-page book called “Chocolate Bar.” The phrase is used in place of “cool.”
“Disneyland is so chocolate bar.”
“I like to help my friends. That is the biggest chocolate bar.”
After just two months on the market, the handwritten and illustrated book and chocolate bars have raised $30,000. Jonah’s parents set up a fund for heir son just after he was born, raising around $400,000 so far, but now “Chocolate Bar” is giving them a big boost. Whole Foods has donated hundreds of chocolate bars and a local Barnes & Noble hosted a book signing that brought in 200 people.
Jonah’s father Rabin Pournazarian says his genetic condition afflicts one in a million children. Jonah is fed with a tube and most days all he eats is cornstarch mixed with chicken soup and vegetables that his mother makes.
They money from the fund, book sales and chocolate sales have been sent to the University of Florida School of Medicine in Gainesville for research. It is noted that Dr. David Weinstein is working with 200 families.
It’s the first time the rare disease has gotten national attention and it’s something they never dreamed possible Pournazarian said.
Photos from ABC News
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