Best Friends, Aged 6 and 7, Team Up to Raise $200,000 to Fight Rare Disease

Jonah Pournazarian, 7, is one of about 100 people in the U.S. who suffer from Glycogen Storage Disease Type 1B (GSD). The disease is incurable and until the 1980s, most of its victims died by the age of two.Dylan Siegel, 6, is Jonah’s best friend. He wanted to help his friend get well and wrote a book in hopes of raising a million dollars to find a cure. The book, entitled “Chocolate Bar” took an hour for the first grader to write and illustrate. The name comes from a term the boys use to describe things they consider awesome or fantastic. Dylan solicited his parents, David and Debra Siegel, to help getting the book published. They turned to a local printer and had 200 copies printed to sell at a school fair.
Debra was hopeful they would at least sell the books they printed because she didn’t want to be stuck with them. The books sold out in a couple of hours and the family made $6,000.
David said they did a second printing and set up a Facebook page and later a website. David said people started to hear about the book and wanted to help Dylan reach his goal.
Six months later, “Chocolate Bar” the book along with actual chocolate bars donated by a local outlet of Whole Foods has raised a combined $200,000.
GSD is a metabolic disease that adversely affects the liver. Lora Pournazarian explains that only cornstarch is keeping Jonah alive. Mixed with water, she administers the solution through a feeding around the clock to keep Jonah’s blood sugar on even keel.
Jonah is allowed to eat other foods but his sugar intake is strictly monitored. His parents have learned to appreciate how precious life is since learning of their son’s illness.
The couple’s two older children Rachel, 9, and Jonah’s twin brother Eli are proud of Dylan for helping their brother.
Funding for research for GSD has been nonexistent because the disease is so rare, no one is interested. Dr. Weinstein was skeptical that “Chocolate Bar” would really help raise significant money. Now he calls the book and Dylan’s efforts astounding.
The boys first met in preschool when they were three. They are now inseparable buddies, hopefully for a long time to come.