14 DAY TRIAL // Dylan Siegel is just 7 years old but he has a big heart and showed the entire world what “best friend” really means. When Dylan found out his friend suffered from a rare disease, he decided to do anything he could to help him get better.
The boy came with the brilliant idea of writing a children's book and help raise money to cure his best friend's Jonah Pournazarian disease.
Jonah, 8, suffers from a rare liver disorder called glycogen storage disease, or GSD, which means his liver can store sugar but can’t release it, causing his blood sugar to drop to potentially fatal levels that can result in seizures or even death.
Because of his liver's inability to break down a complex sugar called glycogen and control the glucose in his body, the boy has to be fed regularly through a feeding tube in his stomach. His parents follow a strict schedule of feeding him in order to keep his metabolism stable.
“That’s huge anxiety every night. We go to sleep going, ‘We hope we don’t miss an alarm clock because he could die,’” Jonah's mother told ABC News.
Currently, there is no cure for the disease and Jonah is one of the 500 children worldwide diagnosed with this rare type of GSD, which is an inherited disorder.
The two boys were best friends since they met in preschool, and Dylan decided to help Jonah fight his ruthless illness. So, when he was 6 years old he wrote a book titled “The Chocolate Bar” which proved to be a big success. Dylan picked this title for his book because he says his friendship with Jonah is as “awesome as a chocolate bar.”
The proceeds from sales of the book go to Dr. David Weinstein's lab at the University of Florida College of Medicine in Gainesville, Florida. The lab is currently working on a cure for the disease.
So far, Dylan’s project raised more than $750,000 (€541,555). “The Chocolate Bar” book has been sold for $20 (€14,44) a copy in 50 states and 42 countries. The little author's goal is to raise $1 million (€722,000), and he's already more than halfway there.
“He’s raised more money for this disease than all the medical foundations and all the grants combined. Ever,” Dr. Weinstein said.
“It is now reality. It's not just a dream that these children can be cured,” he added.
We should all learn a valuable lesson about friendship from this story.