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.'"
But Jonah's parents aren't the only ones looking out for him. His best friend from preschool, Dylan Siegel has his back, too.
Credit: ABC News
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.
"Boy, have I been shocked," Weinstein told ABC News in September, 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. Ever."
When this story aired on ABC World News Wednesday night, "Chocolate Bar" had raised more than $500,000. Fewer than 24 hours later, it had raised an additional $250,000.
When asked where the two boys will be in 10 or 15 years, Dylan said, "High school, and probably his disease would be cured 'cause it's not going to take like 15 years to be cured."
That would be so chocolate bar.
- Arts & Entertainment
- Disease & Medical Conditions
- glycogen storage disease
- David Weinstein