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.
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.