Never underestimate first-graders.
Jonah Pournazarian, 7, is best friends with Dylan Siegel, 6. Jonah has been diagnosed with glycogen storage disease type 1B , a rare liver disorder that doesn’t have a cure. Dylan decided to raise money for research to help his friend. Late last fall, he hatched a plan and approached his parents.
“We said, ‘Let’s do a lemonade stand, the typical thing,’” David Siegel, Dylan’s dad, told ABCNews.com. “He looked at us and said, ‘I want to write a book.’”
After just two months on the market, sales of the handwritten and illustrated book and chocolate bars have raised $30,000 and counting, David Siegel said.
Now Dylan’s goal is $1 million, his father said.
The 16-page book “Chocolate Bar,” uses the term to mean “cool.” “Disneyland is so chocolate bar,” the book starts out. The ending? “I like to help my friends. That is the biggest chocolate bar.”
Jonah’s parents, who live in Los Angeles, set up a fund for their son six years ago that has raised $400,000, but now, “Chocolate Bar” looks set to exceed that sum, his father, Rabin Pournazarian, told ABCNews.com.
Whole Foods has donated hundreds of chocolate bars. A local Barnes & Noble bookstore hosted a book signing that drew 200 people, Dylan’s father said. People from states including Tennessee and Missouri have donated money to the cause via Facebook and a website. The boys appeared on CBS television show “The Doctors” last week, pinching each others’ cheeks as they told their story.
Jonah’s genetic condition afflicts one in a million children, his father said. Most days all he eats is cornstarch mixed with chicken soup with vegetables that his mother makes and feeds him through a tube, his father said.
His feeding schedule is sensitive — the couple keeps an alarm in the bedroom set for 3:30 a.m., his father said. At school, Jonah’s parents have had to ask parents of other children to keep their child home if they get sick or to at least notify Jonah’s parents so they can keep him home.
“What could be a common cold … will land Jonah in the hospital for five to six days,” his father said. “It happened last month.”
Jonah was diagnosed with his illness when he was a baby and suffered from night sweats and low blood sugar, his father said. The existing fund has been “very grassroots” and mostly friends and family have contributed to it, Rabin Pournazarian said.
Jonah, who has a fraternal twin brother Eli who does not suffer from the condition, “gets the importance of finding a cure as much as a 7-year-old can,” his father said. “He doesn’t want his (feeding) tube forever.”
The money from the fund and book and chocolate sales have been sent to the University of Florida School of Medicine in Gainsville where research is taking place under Dr. David Weinstein, who is working with 200 families, he said.
It’s the first time the rare disease has gotten national attention, Pournazarian said.
Jonah and his family couldn’t be happier.
“We never dreamed that this was going to happen,” David Siegel said. “It’s just struck a nerve and now we don’t want to stop until we’ve hit our mission.”
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