Six-year-old boy writes book to raise money to help cure best friend’s disease
The Californian first-grader wrote a picture book, “Chocolate Bar,” to raise money to find a cure for his friend, Jonah Pournazarian.
Pournazarian, 7, has glycogen storage disease type Ib, a rare liver condition that was almost universally fatal until 1971. Money from the sale of the books is donated to the Jonah Pournazarian GSD Ib Fund at the University of Florida, where he receives ongoing treatment. UF houses the largest glycogen storage disease center in the world.
The disease is caused by a faulty gene that prevents the body from releasing glucose from the liver between meals. As a result, skipping meals causes severe hypoglycemia, which can lead to brain damage, seizures and death if not treated. Precise doses of cornstarch were found to be the first effective treatment.
Siegel’s goal is to raise $1 million to help the UF research team find a cure for the condition. He has already raised more than $150,000 toward his goal.
“Type Ib GSD research is entirely funded through donations since there are no foundations to turn to,” said David Weinstein, M.D., director of the glycogen storage disease program and a professor of pediatric endocrinology at UF. “As a result of Dylan and the ‘Chocolate Bar’ book, research will continue, with the ultimate goal of curing GSD.”
The 16-page book lists the many activities Siegel enjoys and describes them as “so chocolate bar,” a catchphrase the friend duo created that means awesome. The “biggest chocolate bar,” according to Siegel, is helping his friends.
For more information or to donate to the fund and receive a copy of “Chocolate Bar,” visit www.chocolatebarbook.com.