LOS ANGELES—Eight-year-old Dylan Siegel’s best friend since preschool is Jonah Pournazarian.
A few years ago, Dylan found out that Jonah had a rare liver condition called Glycogen Storage Disease (GSD), type 1b.
With GSD Type 1b, Jonah’s body can’t process sugars very well. If his blood sugar is not strictly regulated through frequent small meals, his life could be in danger. Since the disease is so rare, research is slim, and there is no cure.
Dylan remembers one day on the way home from school when his mom told him about Jonah’s disease.
“I’m like, ‘Oh my god, this is so horrible,’” he said. “‘I want to help.’”
At first, Dylan wanted to donate $100 from his bank account.
His mom, Debra Siegel, suggested putting together a bake sale or a lemonade stand instead. But Dylan decided to do something much bigger.
He wrote and illustrated a 16-page book called “Chocolate Bar.”
“I hope this book accomplishes finding a cure for my disease and for lots of other diseases, so people with diseases can all be cured, and there’s no more disease,” said Jonah.
Funding a Cure
All the money donated at chocolatebarbook.com is given to the Jonah Pournazarian GSD 1B Fund at the University of Florida. After the fund reaches $1 million, they says they won’t stop there. They hope to eventually create a larger foundation, so they can help more people.
Dylan, Jonah, and their families are not only trying to help find a cure for GSD, they also hope to inspire other children to realize they have the power to change the world.
