Dylan Siegel loves chocolate bars and helping a friend in need.
At just 6 years old, the California native published a book to raise money to find a cure for his friend Jonah Pournazarian, who was diagnosed with glycogen storage disease type 1B, a rare liver condition that can leave a patient vulnerable to life-threatening diseases.
Jonah, 7, travels across the country from California to get treatment at Shands at UF, which is home to the largest glycogen storage disease center in the world.
Jonah and Dylan became friends in preschool. As Dylan got older, he told his mother, Debra Siegel, he wanted to do something to help his friend.
His mother suggested a lemonade stand or a bake sale. But Dylan wanted to write a book.
Dylan wrote and illustrated “Chocolate Bar.” The book features various things he likes.
“‘That’s so chocolate bar’ is code for ‘that’s so awesome,’” Siegel, 37, explained.
Since the self-published book was released in November, about 5,000 copies have been sold and about $175,000 have been raised to find a cure. Dylan hosted a book signing at a local Barnes & Noble to involve the community in his goal to find a cure.
Dr. David Weinstein, director of the Glycogen Storage Disease Program at Shands at UF, said he was grateful that Dylan’s book raises awareness about the disease.
“The money was incredible, but also the publicity for this rare condition is also something that’s invaluable,” he said.
Weinstein said the funding has expanded the research team.
Jonah’s father, Rabin Pournazarian, 42, said he is grateful for Dylan’s efforts to find a cure for his son.
“To have this opportunity, where a 6-year-old has done such an incredible good deed to help raise awareness and raise funds for Dr. Weinstein and the program at Shands, has really been moving,” he said.
Contact Colleen Wright at cwright@alligator.org.
