Jonah Pournazarian, 7, is best friends with Dylan Siegel, 6. Jonah has been diagnosed with glycogen storage disease type 1B , a rare liver disorder that doesn’t have a cure. Dylan decided to raise money for research to help his friend by writing a book called, “Chocolate Bar.” The boys say that to refer to something that’s cool.
After just two months on the market, sales of the handwritten and illustrated book and chocolate bars have raised over $30,000 according to Dylan’s father, David.
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Whole Foods has donated hundreds of chocolate bars. A local Barnes & Noble bookstore hosted a book signing that drew 200 people. The boys are from Los Angeles, but people from other states have donated money to the cause via Facebook and a website.
Jonah’s genetic condition afflicts one in a million children. Most days all he eats is cornstarch mixed with chicken soup with vegetables that his mother makes and feeds him through a tube. His feeding schedule is sensitive and a common cold puts him in the hospital for a week.
Proceeds from their fundraising efforts are sent to the University of Florida School of Medicine in Gainesville where research is taking place under Dr. David Weinstein, who is working with 200 families.