The Chocolate Bar book for a cure was started by seven year old Dylan Siegal for his best friend Jonah Pournazarian, 8. The two boys have been best friends since preschool and Dylan calls their friendship as “awesome as a chocolate bar”. But Jonah has a rare liver disease that is not awesome called Glycogen Storage Disease Type 1b. So Dylan set out to raise one million dollars for his friend by writing a book about their friendship called the Chocolate Bar book.
At seven years-old, Dylan has a big dream to help his friend. Jonah is one of only 500 people in the world with the disorder that causes him to always be fighting dangerously-low blood sugar levels. Every morning at 3 am, his mom or dad have to wake up to an alarm clock, measure out a corn starch and water mixture, and feed Jonah through a tube in his stomach. It is a difficult process, but necessary for their son to live.
“We hope we don’t miss an alarm clock because he could die. His life is our hands,” Lora Pournazarian told ABC 7 in San Francisco. Any good best friend would want to do something to help. In Jonah’s case, the race to find a cure was running out.
Dr. David Weinstein at the University of Florida heads up the research team looking for a cure for GSDT 1b. They were running out of money and hope. Then Dylan got his idea for the Chocolate Bar book. Just six years-old at the time, he told his dad that he wanted to raise the money to help his friend. So he wrote the book and drew the illustrations comparing their friendship to a chocolate bar.
Dylan began to sell copies of the Chocolate Bar at a school event that year. He sold all 200 of the first printed copies, as well as 100 custom wrapped chocolate bars donated by Whole Foods Market. With his first $5,000 raised for his buddy, the sky was the limit. To date Dylan has sold the book in all 50 states and 42 countries, raising over $750,000 for research. And the lab gets every penny.
“It is now reality. It’s not just a dream that these children can be cured,” said Dr. David Weinstein. Dylan’s work is not only a step in the process of finding a cure for his best friend, it is also an opportunity to see what imagination and friendship can accomplish.
If you would like to be a part of finding a cure for Jonah’s disease, you can purchase a copy of the Chocolate Bar book at http://chocolatebarbook.com/donate.