Eight year old Jonah has a rare form of glycogen storage disease, a hereditary disorder that causes his liver to store sugar with the inability to release it. This causes him to have dangerously low blood sugar levels that can result in seizures or even death.
Every morning at 3 a.m. Lora Pournazarian, his mother, gets up to feed Jonah a mixture of corn starch and water through a tube in his stomach. “That’s huge anxiety every night,” said his mother. “We go to sleep but, we hope we don’t miss an alarm clock because he could die”.
Jonah’s parents aren’t the only ones looking out for him. His best friend from preschool, Dylan Siegel has his back too.
Dylan wanted to help raise money to find a cure for the disease. He was only 6 years old at the time, so Dr. Weinstein 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.
“Boy, have I been shocked,” said Weinstein, when the book had crossed the $400,000 mark. “He’s raised more money for this disease than all the medical foundations and all the grants combined”.
“Chocolate Bar” had raised more than $500,000.