At 3 a.m. in 8-year-old Jonah Pournazarian has to be fed with precisely measured bottles of water and cornstarch. He needs to be fed them very few hours, through a tube in his stomach.
Jonah is one of 500 children in the world who suffers from Glycogen Storage Disease Type 1b, which is a rare liver disorder that means he's always fighting dangerously-low blood sugar.
"We hope we don't miss an alarm clock because he could die. His life is our hands," said Lora Pournazarian.
The one scientist who's been racing towards a cure almost ran out of funding, but help is now coming from an unexpected place -- Jonah's best friend from pre-school.
Dylan Siegal, 7, says his friendship with Jonah is as "awesome as a chocolate bar"...and so he wrote a book of the same name.
Dylan read from his book, "I'd like to help my friend, that's the biggest chocolate bar."
At $20 a copy, the book has turned into a sweet success, raising more than half a million dollars, from new friends with big hearts in all 50 states and 42 countries. And every cent goes to the Florida lab, where they now truly believe they're getting close to a cure.
"It is now reality. It's not just a dream that these children can be cured," said Dr. David Weinstein.
When asked where they plan to be in 10-15 years from now, Jonah said "friends" and Dylan said, "Um, high school and probably his disease would be cured."
Just last week, the hospital awarded Dylan for his service.
It is all America strong and as awesome as a chocolate bar.
If you would like buy a copy of the book, click here.
