Friday, March 14, 2014

7-Year-Old Boy Raises More Than $750K To Fight His Best Friend's Disease.

Dylan and Jonah are best friends since preschool.
Dylan Siegel, 6, and Jonah Pournazarian, 7, are best-buds. The two are inseparable, however Jonah suffers from a one-in-a-million liver disease called glycogen storage disease type 1B – and there is no cure.

Dylan takes “best friend” to a whole new level.

Dylan Siegel, 7, would do anything for a friend and he’s gone way beyond friendship for his best friend, 8-year-old Jonah Pournazarian. 

The pair has been inseparable ever since they met in preschool, when Dylan learned that Jonah faces a rare battle their other classmates didn't -- glycogen storage disease, or GSD, according to LEX 18. The condition causes Jonah's blood sugar to drop to potentially fatal levels, forcing his parents to follow an inflexible, round-the-clock schedule of feeding Jonah through a stomach tube in order to keep his metabolism stable

Jonah has to eat through a tube every 1 to 3 hours during the day to maintain healthy blood sugar levels. “What could be a common cold … will land Jonah in the hospital for five to six days,” his father said. “It happened last month.”

Dylan writes a book to raise money for research.

So, back in 2013, when he was 6 years old, Dylan wrote a book to help his friend and others struggling with the disease. But, it's not your typical page-turner and every penny from sales of "Chocolate Bar" goes to research. The book consists of 16 pages and is handwritten and illustrated by Dylan. To him “Chocolate Bar” means “cool” or “awesome”. The book starts out “Disneyland is so chocolate bar” and the ending is the best! Dylan says, “I like to help my friends. That is the biggest chocolate bar.”

The book debuted at a special “good deeds” event at the boys’ school. Over 200 books and 150 custom wrapped chocolate bars sold out quickly, raising $6,000 in just a few hours. . "Chocolate Bar" has given those suffering from GSD renewed hope for a better tomorrow.

Sales of the book and chocolate bars donated by Whole Foods reached $30,000 and tripled in two days. The donations currently totaling $90,000 will go to a research program at the University Of Florida School Of Medicine in Gainesville, Fla.

The money will further research taking place by Dr. David Weinstein, who is working with 200 families. "It is now reality. It's not just a dream that these children can be cured”. 

Dylan wrote a book to raise monies for his best friend.

Dylan’s goal is a million dollars!

Now the goal, set by young Dylan, is $1,000,000 toward a cure.

Jonah's parents set up a fund for their son six years ago which has raised $400,000, mostly through donations from friends and family.

But the couple says that Chocolate Bar is set to surpass that number. For his part, Jonah has helped the cause by signing copies of the book.

Jonah is so “chocolate bar”!

Jonah 'gets the importance of finding a cure as much as a 7-year-old can,' says Mr. Pournazarian. 'He doesn't want his [feeding] tube forever.'

"It's an amazing thing the fact that he didn't just have the idea, he followed through and he actually did it," Debra Siegel, Dylan's mom, said. "And he was so persistent trying to get us to publish the book and sell the book. And he was really, really motivated."

Helping out others is ‘so chocolate bar’, so be sure help Dylan reach his goal and donate. You can find out more about this book here:

A sweet book that's changing the world. Now, that’s so “chocolate bar”!

Nancy Burban 2014

Funeral fund

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