Sometimes we are amazed by the kids in our midst. While most are focused on having fun, doing well in school and, well, just being kids in general, others have a mission they are determined to follow through.
Back in December 7, 2009, I spotlighted teenager Manika Ward. She had written a book, “The Exciting Adventures of Boo,” in the hope of raising $15,000 to donate to the NSPCA. This young “mover-shaker” reached her goal. On Monday morning, May 17, 2010, during a segment called "Pet Pals", where a representative of the SPCA comes on every week with an adoptable pet to show to the viewers, she made the donation live on TV Channel FOX5, Las Vegas.
Now we have Dylan Siegel who went way beyond what many first graders might do for a pal. Siegel, a 6-year-old from Los Angeles, wrote a book called "Chocolate Bar" to raise money for research into what ails his best friend, Jonah Pournazarian. Jonah, 7, suffers from glycogen storage disease type 1B,.a one-in-a-million liver disease. Unfortunately for Jonah, at this time there is no cure. Yesterday Gretchen Carlson talked to Jonah on Fox News.
I’ve always said chocolate has magic powers, but this is the most powerful chocolate story I’ve ever heard.
Whole Foods donated chocolate bars for the cause, and to date sales of the book and chocolate bars have exceeded $92,000. The donations, which will go to a research program at the University of Florida School of Medicine in Gainsville according to ABC, have been growing rapidly in the wake of the boys’ TV appearances.
"Chocolate bar" is Dylan-speak for "awesome," which pretty much describes the campaign so far.
He said he was “really sad” that Jonah was sick and “wanted to help him,” so he pitched his idea to his parents back in October 2012. The attention that the young do-gooder has received was light-years beyond what Mom and Dad foresaw when they agreed to help him.
"As far as a 6-year-old can process it, it's pretty exciting to him, seeing himself on TV," his mom said to HuffPost. "[But] we're not making that big a deal of it at home."
Realizing how hard marketing something like a book to raise money would be, particularly one written by a 6-year-old, at first his parents suggested Dylan try a more conventional method of fund-raising (bake sale anyone?). Young Dylan shot that idea down with a don't-patronize-me attitude, his mother confirmed. Undaunted, Dylan produced the first handwritten and illustrated pages within an hour. "Dylan actually gave us something to work with," she recalled to HuffPost.
His mother Debra is a professional organizer, and Dylan's dad, David Siegel is a marketing executive for Disney. When they saw their son’s efforts, they realized the book "would strike a chord."
Life got in the way and the book sat on Debra’s desk while she dealt with some family emergencies. "Good Deeds Day" at his school approached in early November and Dylan stepped up his campaign. He implored his mother to copy the book. Finally, the big day arrived and the book sold an unbelievable $6,000 worth of copies and chocolate bars.
Then a book-signing by both Dylan and Jonah at The Grove, a popular L.A. mall, generated another $5,000 in book sales. The fund kept growing as other book sales, including online proceeds, TV appearances and publicity continued and the momentum has not stopped since. Thanks to young Dylan and Jonah, media outlets have put the spotlight on a disease that doesn't get a lot of attention.
Jonah has a monitor at school who measures his blood sugar because the disease hinders the metabolizing of food. Dylan and Jonah are truly “best-buds” and after class the boys to have play dates at Jonah's house so his parents can be sure the disease is effectively managed..
It was pointed out on ABC News that Jonah often eats through a tube, sometimes corn starch or chicken soup with vegetables. His disease makes him very vulnerable to being felled by things most kids would easily recover from. When he caught a common cold, he ended up in a hospital for several days.
The Chocolate Bar Facebook page points out that a cure is close. With one success after another Dylan is not about to settle for less. His goal is now set at $1 million to accelerate the research.
Dylan summed up his effort on the Chocolate Bar website by saying that helping his friend was the biggest chocolate bar of all.
Who ever said that kids can’t make a huge difference? Just look at what Manika and Dylan have done with their books and a little help from their friends.
Those who would like a copy of "Chocolate Bar" or want to donate in another way can click here.
Morgan St. James is the author of ten books ranging from mysteries like the award-winning Silver Sisters Mysteries series and Who's Got the Money? to memoirs like Can We Come In and Laugh, Too?. All of her books can be found on Amazon, Barnes & Noble and other online booksellers. She has written over 500 articles for Examiner.com. Visit her websites www.morganstjames-author.com and http://writerstricksofthetrade.blogspot.com