When it comes to children, adults hope to shield them from adult problems or situations until they reach an age where they are emotionally and intellectually prepared to handle them. So how does a seven-year-old boy with an extremely rare liver disease, where there is no cure, cope at such a young age? One way is having a best friend, who not only supports him, but makes it his mission to help raise awareness and money in the hopes that a cure will be found.
Six-year-old Dylan Siegel wrote a book titled ‘Chocolate Bar’ that not only has raised thousands of dollars toward research, but also awareness of a disease that very few knew even existed.
Jonah Pournazarian, age 7, suffers from glycogen storage disease type 1B, which is a one-in-a-million liver disease that has no cure. Though the future sounds dim for Jonah, a cure could be found in time to help the young boy. Thanks to the efforts of his best friend, Dylan, who wrote a book called ‘Chocolate Bar’ in the hopes of raising money for research.
Dylan’s mom, Debra Siegel, told the Huffington Post on Tuesday that Whole Foods has donated chocolate bars for the cause. Sales of them and the book have exceeded $30,000.
The boys appeared last week on the CBS show “The Doctors” and according to ABC, the donations have the opportunity to increase, as a result of the public exposure. The donations will go towards a research program set up at the University Of Florida School Of Medicine in Gainsville.
For Dylan, “Chocolate Bar” has come to mean “awesome,” which is one good term to describe how the campaign has been going up till now. Mom and Dad, though originally expecting there to be some attention, admits to being taken back with the public response toward the actions of their son.
Debra told the Huffington Post, “As far as a 6-year-old can process it, it’s pretty exciting to him, seeing himself on TV. [But] we’re not making that big a deal of it at home.”
Dylan’s mom said they tried to steer their son to raising money using a more realistic approach. She had told the Jewish Journal, “I suggested that he set up a lemonade stand. But he said he wanted to write a book.”
However, Dylan had responded to the idea with a don’t-patronize-me attitude. Within one hour, their son came back to them and presented them with his first illustrated and handwritten pages of the book.
His mother recalled, “Dylan actually gave us something to work with.” They both soon realized the book could be successful as David Siegel, Dylan’s dad, works for Disney as a marketing executive and Debra, being a professional organizer, felt that it “would strike a chord.”
Dealing with a family emergency, the original book sat on her desk and stayed there until early November as the boys’ “Good Deeds Day” at school was approaching. Dylan continued to ask his mom to copy the volume and when the big day arrived, the book ended up selling $6,000 worth of copies and of chocolate bars.
The first entry in the 16-page books reads: “I like to go to Disney Land. That is so Chocolate Bar.” It then goes into other “chocolate bar” experiences, including going swimming and to the aquarium.
It ends with “I like to help my friends. That is the biggest chocolate bar.”
Dylan and Jonah would later end up at the Grove, a popular mall in L.A., to do a book-signing and Debra said they generated $5,000 in book sales. Also, other book sales that included online proceeds which raised an additional $19,000. Sales continue to grow as media outlets have been making public a disease not known for getting much attention.
Dylan’s mom says that while all of this has been going on, both Dylan and Jonah have continued their friendship, both at elementary school and after classes. At school, Jonah has a monitor to keep track of his blood sugar as the disease hinders the food from being metabolized.
She adds that it is better for Jonah after school if the boys have their play time at his house so that Jonah’s parents can make sure his disease is being monitored effectively. ABC News reported that Jonah usually eats through the use of a tube and sometimes will eat chicken soup with vegetables or corn starch.
One thing to keep in mind is how vulnerable Jonah is, as his father, Rabin Pournazarian says, “last month Jonah caught a common cold and had to go to be treated at a hospital for several days.”
According to the Chocolate Bar Facebook page, a cure is close and Dylan has increased his efforts and hopes to raise $1 million to hopefully speed up research.
Dylan’s father said that, “We never dreamed that this was going to happen. It’s just struck a nerve and now we don’t want to stop until we’ve hit our mission.”
Those looking to donate to the cause can go to the project’s Facebook page. As for Dylan, he summed up his effort on the Chocolate Bar website called: “Helping my friend is the biggest chocolate bar.”
Chocolate Bar For A Cure Video
Chocolate Bar for a cure video featuring best friends Dylan and Jonah. “Chocolate Bar” means “awesome” to 6-year-old Dylan Siegel, who wrote this book to raise $1 million towards a cure for his best friend Jonah’s rare liver disease.
Chocolate Bar and Dylan & Jonah on ABC
ABC featured Dylan Siegel and Chocolate Bar Barnes & Noble book signing. “Chocolate Bar” means “awesome” to 6-year-old Dylan Siegel, who wrote this book to raise $1 million towards a cure for his best friend Jonah’s rare liver disease.
Dylan Siegel Chocolate Bar Book
Dylan Siegel discusses Chocolate Bar the book and shares his goal to raise $1 million dollars to cure his best friend’s rare liver condition GSD 1B.
Chocolate Bar Featured on The Doctors
6-year-old Dylan and his best friend Jonah appeared on CBS’ “The Doctors” Feb. 21, 2013 to talk about GSD, a cure for this rare liver disease and Chocolate Bar, the book.
“Chocolate Bar” means “awesome” to Dylan, who wrote this book to raise $1 million towards a cure for his best friend Jonah’s rare liver disease.
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