Awesome (1009)

• November 7, 2014
• EIA Staff
• 1613
• 0

At 6 years old, Dylan Siegel decided he could change the world. Well, maybe not the whole world, but at least the life of his best friend, Jonah Pournazarian.

Jonah has glycogen storage disease type 1b, or GSD, a rare genetic disorder that affects the liver of 1 in 1,000,000 newborns. Those with GSD lack the enzymes which enable the storage or release of glycogen, so the body must use riskier methods of supplying itself with energy. Jonah’s body is unable to digest sugars so he is fed a special formula through a tube in his stomach every day, and it’s more difficult for him to fight mild infections.

Seeing the daily difficulties Jonah was faced with, Dylan was determined to help him find new methods to treat GSD. “Chocolate Bar” was written by Dylan when he was 6 with a simple idea in mind. The book focuses on a boy who believes his words and pictures can help his best friend deal with his disorder. [Dylan uses the phrase “chocolate bar” as a substitute for “awesome.”]

Dr. David Weinstein from the University of Florida is using research for gene therapy to create new treatments for people with GSD. All of the proceeds from the book go towards Jonah’s research fund with the university.

This was especially meaningful because Dr. Weinstein’s research ran out of funding earlier this year. Dylan’s goal is to raise $1 million for GSD research, and he’s almost there, collecting over $900,000 in the past two years!

Now eight years old, Dylan hopes to inspire other kids to believe that pursuing their ideas, no matter how big or crazy, can change the world. People from over 60 countries have supported Dylan’s mission by buying this awesome book.

“Chocolate Bar” has also raised awareness for GSD, with more children being diagnosed every year. Because of their dedicated work, Dylan and Jonah won the first ever Young Philanthropist of the Year award from the University of Florida.

Dylan offered some simple advice to other youths with saying, “Don’t just think about what you wanna do, just do it, and if you want help, ask your parents and you can make anything happen.”

Source: Inspire More
Alissa Fairchild > Twitter