An extremely rare disease is getting national attention after a 6-year-old boy raised $30,000 to find a cure for it.
Dylan Siegel is best friends with Jonah Pournazarian, 7. Jonah has a disease called glycogen storage disease type 1B, which is a rare liver disorder.
Dylan was worried about his best friend, so he approached his parents to come up with a plan to raise money for researching the disease. His parents suggested a lemonade stand, but Dylan said he wanted to write a book.
He wrote a 16-page book called “Chocolate Bar.” In the book, the term “chocolate bar” is synonymous with “cool.” He writes, “Disneyland is so chocolate bar,” and ends the book with “I like to help my friends. That is the biggest chocolate bar.”
Dylan hopes that the book will raise $1 million.
Many stores have helped sell the book, including Whole Foods and Barnes & Noble. The Facebook and website have received donations from people all over the country, and last week, the two best friends appeared on “The Doctors.”
Jonah’s condition is so rare that it afflicts only one in 1 million kids. Usually, the only thing he eats is cornstarch mixed with chicken soup and vegetables that his mom feeds him through a tube.
His feeding schedule is so sensitive that his parents have to set an alarm for 3:30 a.m. They’ve also asked parents of other children at his school to keep their kids home if they’re sick, or at least warn them so that they can keep Jonah home.
“What could be a common cold will land Jonah in the hospital for five to six days,” his father said. “It happened last month.”
Money from “Chocolate Bar” sales and donations goes to the University of Florida School of Medicine in Gainesville where Dr. David Weinstein is conducting research on the disease.
“We never dreamed that this was going to happen,” Dylan’s dad said. “It’s just struck a nerve and now we don’t want to stop until we’ve hit our mission.”