Awesome is best described by one thing for Dylan Siegel – “Chocolate Bar.” The now 10 year old wrote the book “Chocolate Bar” at just 6 years of age to raise money to find a cure for his best friend since pre-school, Jonah Pournazaria. Jonah has a very rare liver condition with no known cure.
Affecting literally one in a million, Glycogen Storage Disease Type 1b (GSD Type 1b) is a genetic condition. Jonah lacks the liver enzyme to turn glycogen into glucose, rendering him unable to regulate his blood sugar levels. Because his blood sugar can drop dangerously low, Jonah must consume a mixture of ordinary cornstarch and water every few hours. GSD Type 1b also results in fewer than normal white cell counts so the ability to fight off even mild infections can mean prolonged hospitalization.
With the help of their parents, Dylan and Jonah, sold copies of the book and custom wrapped chocolate bars at school events. Each page within the book listed something “chocolate bar,” or awesome, like Disneyland, swimming, or helping a friend.
But Dylan had a goal to raise one million dollars to help researchers at the University of Florida find a cure for Jonah. So soon the two boys held book a reading and signing date at a Barnes & Noble bookstore and attracted the attention of local media which eventually resulted in appearances on CBS’ The Doctors, Headline News’ Raising America, Fox News’ Fox & Friends, The Today Show in Australia, an interview with Chelsea Clinton for NBC Nightly News with Brian Williams, and ABC World News with Diane Sawyer. The boys have also appeared on numerous websites and print media.
Today the boys have sold more than 26,000 copies of Chocolate Bar to readers in all 50 states and in nearly 60 countries with all of the proceeds going to GSD research. Two years after Dylan first wrote the book, he reached the goal of one million dollars with each cent raised from “Chocolate Bar”sales going directly to a University of Florida research lab working to find a cure for Jonah’s rare liver disorder.
“My parents and Jonah’s parents worked their butt off,” Dylan says. “I knew that it was gonna happen. My instincts told me.”
But Dylan says won’t stop raising money until Jonah cured.
“I’m still in shock,” says Jonah’s doctor, Dr. Weinstein. There are now plans for human trials for GSD gene therapy after his team found treatments for mice with Jonah’s rare disorder. “We are on the verge of curing or treating this disease, and that would not have been possible if a 6-year-old boy hadn’t created this book.” Weinstein said that when he finds a cure, he wants Dylan right there next to him.
And when the cure is found the boys look forward to the day when Jonah will actually be able to eat one of the chocolate bars that has come to his aid. Jonah says because of his illness, “I never have a sleepover at someone else’s house. Once I get cured, Dylan and I made plans to have a huge slumber party, and just have fun. Play games, watch TV. Just us two.”
It is an awesome friendship best described by two words – chocolate bar.
Find out more here:
We invite you to follow inspiration and insight at InspiringLifeOver50.com – for those over 50 who continue to change the world and those who love them. We are Inspired – not Retired!