Two best friends, ages 6 and 7, raise $200,000 to fight rare disease
05/15/2013 4 Comments Contact Our News Editors
By Mary Murray, Senior Producer, NBC News
LOS ANGELES -- There are only about 100 people in the U.S. like 7-year-old Jonah Pournazarian.
He suffers from a rare genetic and incurable disease called Glycogen Storage Disease Type 1B. Up until the 80s, most kids with his condition didn't survive past the age of two.
But his best buddy, Dylan Siegel, wanted his friend to get better, so he wrote a book hoping to raise one million dollars to find a cure.
It took him an hour to write and illustrate the pages of "Chocolate Bar," an expression the boys use to describe something great, fantastic, or awesome.
He then nagged his parents to find a publisher. David and Debra Siegel, who live in Los Angeles, Calif., turned to a local printer for help.
"We had 200 copies to sell at a school fair," said Debra Siegel. "We were hoping that we could sell all the books we had printed. We didn't want to get stuck with these books."
In a couple of hours, the boys sold every copy and had collected $6,000.
"Lo and behold, we had to do a second printing," said David Siegel, who then set up a Facebook page, and eventually a website. "People started to hear about this beautiful little book and wanted to help, be a part of Dylan's Magic."
Click here to visit the Chocolate Bar website and here to visit their Facebook page.
In six months, sales of "Chocolate Bar," as well as real chocolate bars donated by a local Whole Foods supermarket, have raised $200,000 along with awareness of a disease most know little about.
Cornstarch becomes Jonah's lifeline
GSD is a metabolic disorder that affects the liver.
"The only thing keeping my son alive is cornstarch," explained his mother, Lora Pournazarian, as she mixed a precise dose of cornstarch and water. She administers this mixture through a feeding tube around the clock to keep Jonah's blood sugar levels even.
Jonah is permitted to eat other foods, but sweets, fruits and dairy can only be had in strict moderation.
"He can have a bite of an apple. Nothing will happen to him. He can have a slice of pizza if he wants to, and it's okay," said Lora. "You know, his main food is bread. If he eats, bread with butter. And plain pasta."
Despite the work involved in being constant caregivers, Jonah's father Rabin Pournazarian said he's grown to appreciate life more since Jonah was born.
"I understand how fragile life is. I understand how difficult it is, at the end of the day, to have a child with special needs. I understand what a blessing it is to have a child with special needs," he said. "Unfortunately, I've become a little bit more impatient, and -- just life is more stressful now than it was before. But that's okay, it's just -- it's different. But different isn't bad."
The Pournazarians have two other children, Rachel, 9, and Eli, Jonah's twin brother, who both say they're proud of Dylan for everything he's done to help their brother Jonah.
"It's really amazing to me that a boy his age can make this happen," Rachel said.
Dylan and Jonah's siblings Eli, Rachel and Jack share their excitement and appreciation for the "Chocolate Bar" book.
An "astounding" book
Professor Dr. David Weinstein, director of the Glycogen Storage Disease Program at the University of Florida, is working on finding a cure through gene therapy. Because it is so rare, he said, "We're just in the infancy of really trying to treat this."
Funding research for what Weinstein describes as an "orphan disease," something rare that affects a small population, has been challenging.
"It's too small for the NIH [National Institutes of Health] to care about, too small to have a foundation," Weinstein said.
Until "Chocolate Bar," he added, "we had no place to turn.”
Like other adults, Weinstein was skeptical that Dylan's book would help his efforts.
"I thought it was wonderful that Dylan wanted to help Jonah," said Weinstein, but at the time he doubted the book would make any real difference.
Now, he calls Chocolate Bar "astounding."
"To think that a 7-year-old boy could write a book that could raise more money than all the medical foundations combined! This book is going to allow us to build research teams so that we can really work toward improving the lives of these children," he said.
And why not? To Dylan and Jonah, friendship is that simple.
"Dylan wrote the book to help me," said Jonah.
"I want Jonah to feel better," said Dylan.
The boys say they've been best buddies for "years." The two first started playing together in nursery school, when they were three. These days, they are inseparable.
"We're not really good friends," said Jonah. "We're really, really good friends."
Correcting him, Dylan replied, "No, we're not really, really good friends. We're really, really, really, really, really good friends."
Clearly, the best of friends.