When 6-year-old Dylan Siegel found out his best friend, Jonah Pournazarian, had a rare liver disease, he went to his parents and told them he wanted to raise money for Jonah.
Jonah, Dylan’s best friend, has a rare form of glycogen storage disease, which is a hereditary disorder that means his liver can store sugar but can’t release it. This causes him to have dangerously low blood sugar levels and can result in seizures or even death. Jonah has an especially rare form of the disease — type 1b — which means on top of the glycogen storage issues he also has a compromised immune system. This means that catching a simple stomach bug from a classmate could mean hospitalization or even death for the young boy.
Dylan’s father, David Siegel, told ABC News that they thought it was “sweet” that their son wanted to help raise money for research and treatments for Jonah’s illness and they offered to help him have a bake sale or lemonade stand. But Dylan had a different idea. His dad said, “He’s like ‘Don’t patronize me. I want to do something big.'”
24 hours after his announcement Dylan brought his parents the pages to a book he had written called “Chocolate Bar.” He told them that, to him, “chocolate bar” means “awesome.” The book starts out with, “Disneyland is so chocolate bar,” and ends with, “I like to help my friends. That is the biggest chocolate bar.” His parents had 200 copies of Dylan’s book printed and sold them at a school event. Within a short time they had sold all 200 copies and raised over $6,000. Now, a year after Dylan first wrote “Chocolate Bar,” he has raised over $400,000.
Dylan’s goal is to raise $1 million, and with the expansion of “Chocolate Bar” into T-shirts, tote bags and even cellphone cases he’s sure he can reach that goal.
Dr. David Weinstein, who studies the rare disease at the University of Florida, told ABC News that when he first heard about Dylan and his plans he “mostly just thought the boy was cute.” But after seeing what Dylan has accomplished Weinstein said, “Boy, have I been shocked. He’s raised more money for this disease than all the medical foundations and all the grants combined. Ever. This is a disease that affects one in a million people. In the United States … it’s probably close to 50 people with type 1b.”According to Weinstein the money Dylan has raised is truly “making a huge difference.” He explained that:
The money is already helping his lab by allowing him to hire additional staff and paying for studies. He’s currently studying a gene therapy treatment that has shown promise in curing dogs with glycogen storage disease, and trying to find solutions to other problems that develop as a result of the disease and its treatment.
Even though people come from 38 countries to visit Weinstein’s lab, it came within one day of closing for lack of funds. Thanks to Dylan and Jonah, Weinstein said he could stop worrying about funding and work on finding a cure.
Dylan and Jonah have also been honored by the Global Genes Project, a rare disease advocacy group, with their RARE Champion Award. According to Dylan’s father the award usually goes to an adult, but Dylan’s efforts are impossible to ignore. His father couldn’t be more proud. He said, “Kids can change the world just like any of us … When you’re 6, you’ve got grand visions … all these things just seem attainable. It’s been a blast … It validates a 6-year-old’s vision of what he thought change could be.”