World News – Lora Pournazarian rarely sleeps through the night. A bundle of nerves, Lora is up every few hours — eyes fixed on the alarm clock, thoughts focused on her 8-year-old son, Jonah. Ten times a day, Lora and her husband, Rabin, feed Jonah a mix of corn starch and water through a tube.
The little boy suffers from a rare form of glycogen storage disease (GSD), a genetic condition that throws his blood sugar out of balance. It’s a serious, potentially fatal disorder that demands 24/7 care and attention — but you’d never know it if you met Jonah, a rambunctious kid with a goofy sense of humor and a sweet smile.
Jonah isn’t just a daily joy for his parents. He’s also an inspiration to his best friend, 8-year-old Dylan Siegel of Los Angeles, California. Two years ago, Dylan wrote and illustrated a book — “Chocolate Bar” — in the hopes of raising money to find a cure for Jonah’s disease. When we first reported on this story, Dylan, Jonah and their parents had raised $200,000 through sales of the book, which is named after Dylan’s silly synonym for “awesome” and “cool.” Now, Dylan and Jonah have raised over $800,000 — close to Dylan’s goal of $1 million. “I asked him what we was gonna do after we hit a million dollars,” Debra Siegel, Dylan’s mother, told NBC News. “And he said, ‘Well, we’re gonna keep going ’til Jonah’s better.’ And that’s how we all feel.”
The money is funding research at the University of Florida led by Dr. David Weinstein, who says a cure for the disease is on the horizon. Jonah’s parents pick up the cost of printing and shipping so every cent benefits the lab in Florida. With the funds raised through the “Chocolate Bar” book, Weinstein and his team have been able to hire more staff, and they’re making key strides. “Chocolate Bar” is a “very, very powerful instrument,” David Siegel, Dylan’s father, told NBC News. “It’s raised awareness to the level that doctors can make serious change.”
Since we first aired our report about this story in 2013, we’ve heard from many of you asking how you can help support the Jonah Fund. If you’d like to follow up, you can click Donate with Amazon here.
— By Kate Snow, Jay Blackman and Daniel Arkin – NBCNews.com