When the ABC News correspondent asked 7-year-old Dylan Siegel and 8-year-old Jonah Pournazarian where they thought they would be in 10 to 15 years, Dylan didn’t hesitate to answer.
“High school and probably his disease will be cured,” Dylan said, pointing to his best friend. And Jonah’s response: “Friends.”
Their answers perfectly captured the spirit and purpose of the two California boys’ journey that began 15 months earlier and so far has resulted in more than three-quarters of a million dollars in donations from people all over the world.
In other words, it was a “chocolate bar” answer.
The story began in November 2012 when Dylan’s idea to raise money to help fight Jonah’s rare genetic liver disease took shape in the form of a 14-page book. In the book, Dylan lists some of his favorite things, calling them “chocolate bar,” his term for awesome.
What happened next was nothing less than awesome.
After convincing his parents to print a couple hundred copies of the book, he took them to his school for a community fundraising day, where he and Jonah sold all 200 books, signed autographs and raised $6,000.
“We thought this book was really cute, and maybe we’d raise a little bit of money,” said Jonah’s mother, Lora Pournazarian. “We left the school that day thinking, this is amazing what Dylan has done.”
By December, Dylan’s book had raised another $20,000 and a lot of media attention. Southern California news stations had picked up the story, Barnes & Noble in Beverly Hills held a book signing and Whole Foods was on board, donating money and chocolate bars to hand out to those who buy the book.
By early 2013, the story of Dylan helping his friend and his friend’s UF doctor find a cure for glycogen storage disease had gone “viral.” People from around the world were buying the book, and international news organizations were writing about the story and airing interviews with the young author and his best friend.
“I think people are inspired by the friendship and by the innocent nature of what Dylan has done,” said the boy’s father, David Siegel. “This is something that came from his heart and from his love for his friend.”
After many milestones in the “Chocolate Bar” journey, an important one came in February on an appropriate day — Rare Disease Day — when sales of the book reached $750,000. Dylan was closing in on his goal.
“I want to raise $1 million to find a cure for Jonah,” Dylan said in December from his home in Southern California.
About one in 100,000 people live with GSD, but Jonah’s type, type 1b, is a one-in-a-million case. Children like Jonah receive doses of water and cornstarch at scheduled intervals throughout the day and night because the mixture metabolizes more slowly than other carbohydrates. Until this therapy was discovered about 30 years ago, most children born with this disease did not survive past infancy.
“In one year, Dylan and his book have done more to bring attention to this disease and raise money for research than has ever been done before,” said UF pediatrician David Weinstein, MD, director of UF’s Glycogen Storage Disease program, the largest GSD Program in the world. “When we finally find a cure, we’ll be thanking Dylan for pushing the medical community to make it happen.”
GSD type 1b means a constant battle against dangerously low blood sugar levels and infection,since those who suffer from it have low white blood cell counts, which can create serious and often fatal health risks.
The Siegel and Pournazarian families are partnering with UF to find better treatments and a cure for GSD. One hundred percent of the book’s proceeds support Weinstein’s research.