Being Awarded the RARE Champion Award – Advocacy
Dylan Siegel / Jonah Pournazarian, “Chocolate Bar Book” Boys
Bake sales and lemonade stands were not going to cut it for 6-year-old Dylan Siegel. When his friend’s family asked for help to raise money for their son’s rare liver disease, Dylan had a unique solution. He would write a book, and without further ado, he grabbed his mother’s stationary and started writing the story that would earn over $300,000 towards the cause.
With the help of his parents, his book “Chocolate Bar” was quickly published, creating increased awareness for the disease.
“Dylan’s passion and determination caught us all off guard,” says Debra Siegel, Dylan’s mother. “It’s one thing to have an idea and entirely another to see it through, especially for a 6-year-old.”
Dylan and Jonah had grown up together, attending the same preschool, play dates and basketball teams. Dylan was always curious about Jonah’s condition of Glycogen Storage Disease, and as they grew older and he was able to witness blood draws, tube-feedings and hospital visits, Dylan’s continued curiosity sparked a deep determination to help his friend find a way to get better.
Though Jonah’s condition is fragile and without proper feeding can lead to hypoglycemia or seizures, he continues to participate in all the normal activities a healthy 7-year-old would, including soccer and basketball. Though his parents’ keep a close eye, they’re happy to see him doing so well.
Dylan hopes to see his book, “Chocolate Bar,” raise over a million dollars, after which he plans to write more books.