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AbledKids Post Banner shows a video still from ABC News of 7 year-old Dylan Siegel holding up a copy of his hand-drawn book 'Chocolate Bar'. The headline reads: AbledKids: Dylan Siegel and Jonah Pournazarian: Best friend's book raises over 750 thousand dollars for liver research.

“He’s raised more money for this disease than all the medical foundations and all the grants combined. Ever.”

 

Every morning at 3 a.m. Lora Pournazarian is awake to feed her 8-year-old son Jonah a mixture of corn starch and water through a tube in his stomach.

 

If she doesn’t, Jonah could die because he has a rare form of glycogen storage disease, a hereditary disorder that means his liver can store sugar but can’t release it, causing him to have dangerously low blood sugar levels that can result in seizures or even death.

 

“That’s huge anxiety every night,” his mother Lora Pournazarian told ABC News. “We go to sleep going, ‘We hope we don’t miss an alarm clock because he could die.’”

 

For more information on “Chocolate Bar,” click here.

 

But Jonah’s parents aren’t the only ones looking out for him. His best friend from preschool, Dylan Siegel has his back, too.

 

Dr. David Weinstein, who studies and treats patients with glycogen storage disease at the University of Florida, was almost out of funding when he heard that Dylan wanted to help raise money to find a cure for the disease. Dylan was only 6 years old at the time, so Weinstein mostly just thought he was cute.

 

But Dylan had other plans. He wrote a book called “Chocolate Bar,” and explained to his parents “chocolate bar” means “awesome” to him. “Disneyland is so chocolate bar,” the book starts out. The last page says, “I like to help my friends. That is the biggest chocolate bar.”

 

Dylan’s project raised more than $750,000 in a little more than a year by selling the books for $20 each in all 50 states and 42 countries. Every cent goes to Weinstein’s lab.

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1st grader Dylan Siegel wanted to do something to help his best friend, 1st grader Jonah Pournazarian (both are students at the Stephen S. Wise Elementary School). Jonah has Glycogen Storage Disease (GSD 1b), a rare liver condition.

 

So Dylan decided to WRITE A BOOK – he called it “Chocolate Bar”, as in ‘awesome – so chocolate bar!’. It was Dylan’s plan to sell copies of this book to raise funds for the GSB 1b Fund at the University of Florida.

 

Today, at the Barnes & Noble at the GROVE (one of LA’s upscale malls), there was a program which inluded musical selections by some of the members of the SSWT Elementary School 1st, 2nd, and 3rd grade choir (Faye Jeser, musical director), followed by Dylan READING his book, and then traditional book signing by the author. 

 

Both Dylan and Jonah were members of the choir, and both sat on the couch together as Dylan read his book for the over 150 people in attendance. 

 

Facebook page: http://www.facebook.com/Chocolatebarbook

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