Our kids learn how to raise money from a young age, usually through school fundraisers by selling magazines or candy bars. 8-year-old Dylan Siegel decided to raise money on his own by writing a book after watching his best friend suffer from a rare disease. He was only 6 years old when he wrote “Chocolate Bar”, and all proceeds would be donated in the hope of finding a cure for his friend Jonah.
Jonah suffers from Glycogen Storage Disease Type 1b, a rare liver disease that inhibits his body from turning glycogen in to glucose which means he can’t regulate blood sugar levels. Low blood sugar can result in seizures and death. Children with this genetic condition also have low white blood cell counts meaning the smallest infection can leave them hospitalized for weeks.
For now, every couple hours Jonah receives a mixture of cornstarch and water through a feeding tube in his stomach. This helps stabilize his blood sugars. After watching Jonah deal with these daily struggles, Dylan was inspired to help.
Over the past 2 years “Chocolate Bar” has raised over one million dollars! From the Chocolatebarbook.com website:
“All money raised goes directly to Jonah’s research fund at the University of Florida where his doctor, GSD expert Dr. David Weinstein, is completing the research phase and preparing for human clinical trials. The cure for GSD will prove that gene therapy works and therefore charts a course for changing the face of health care.”
Both boys hope their story will encourage kids everywhere and prove that their actions can change the world.
Watch their amazing story below:
