Mar 6, 2014 4:31 PM
Dylan Siegel and Jonah Pournazarian aren't your average best friends. Jonah was diagnosed with a very rare liver disease called glycogen storage disease, or GSD, when he was six months old.
GSD affects his blood sugar levels, so he has to drink corn starch every two hours. There is no cure for GSD.
"That anxiety of going to bed thinking that if we don't get up to feed him, he could die," said Lora Pournazarian, Jonah's mother. "He can have a seizure, go into a coma, and die; this disease kills."
The two boys met in pre-school where Jonah told Dylan about his disease and they have been inseparable ever since.
"I heard that Jonah had a disease and then I felt bad for him that he had to drink corn starch every day and always check his blood and do all this stuff everyday," said Dylan Siegel. "And if he didn't have this disease then he wouldn't be doing it. So then I wrote a book to help him stop doing all this bad stuff everyday."
Dylan would not give up until his book was published. The book is called "Chocolate Bar."
"It's an amazing thing the fact that he didn't just have the idea, he followed through and he actually did it," said Debra Siegel, Dylan's mom. "And he was so persistent trying to get us to publish the book and sell the book. And he was really, really motivated."
All of the proceeds go to research to find a cure for GSD and to help treat similar diseases.
"Chocolate Bar" is Dylan and Jonah's way of saying "awesome." And the "Chocolate Bar" book is filled with all the different things that these two boys think are chocolate bar.
Dylan says the most chocolate bar thing about the experience is writing the book.
So far, the "Chocolate Bar" book has raised over half a million dollars.
You can purchase the book and find more information at chocolatebarbook.com
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