A campaign started by a couple of American primary school children two years ago to help find a cure for a rare genetic disease passed the $1 million mark in December, with donations streaming in from all 50 states and 60 countries across the globe.
The achievement was reported by major TV networks as the perfect feel-good story, but the trigger for this global effort was a sombre diagnosis at the birth of Jonah Pournazarian.
The playful, redheaded youngster was born weighing 4lb and with a very rare metabolic malfunction, known as Glycogen Storage Disease, or GSD.
Type 1b of GSD is so rare — less than 100 children in this category have been identified in the United States — that medical researchers and potential grant givers have long ignored it.
However, one person decided to end the indifference. His name is Dylan Siegel, now 8, who was Jonah’s best buddy when both were first graders at the Wise School, affiliated to Stephen Wise Temple, a large Reform congregation in Los Angeles.
One day two years ago, Jonah heard his mother talk about an effort to raise money to support the work of a leading GSD researcher, and Dylan said he, too, wanted to give some money.
As Debra Siegel recalls: “I suggested to Dylan that he set up a lemonade stand, but he said he wanted to write a book.” She took her son’s plan as a fantasy, but the next day Dylan presented his parents with the finished product.
The cover of the richly illustrated, 14-page booklet reads: “Chocolate Bar, by Dylan Siegel” and the tone is set in the first entry: “I like to go to Disney Land. That is so Chocolate Bar.”
Other “Chocolate Bar” (read “awesome”) experiences recalled by the author included going to the pool, aquarium and bowling alley, ending with “I like to help my friends, that is the biggest Chocolate Bar.”
Writing the book was just the beginning, and Dylan kept pushing the project. He recruited his father, a marketing consultant, who ordered an initial print run of 200 copies of the book.
At the temple’s Mitzvah Day, the two boys and their parents sold enough autographed books — at $20 each — and $5 chocolate bars (donated by a local food market) to raise about $7,000.
In late 2012, the Jewish Journal ran an article about Jonah and Dylan’s mission to help find a cure for GSD.
The article came to the attention of a producer for the NBC television network, who asked Chelsea Clinton, then doing feature segments for NBC, to look into the story. Chelsea did, showed up at the Wise School, and the story was aired on the national NBC evening news.
The story went global and by early December 2014, David Siegel, Dylan’s father, reported the sale of 25,000 Chocolate Bar books. Support for the project came from some 10,000 people, most of them mailing donations in the $20 range. Letters and money came from 60 countries, including Mongolia, the UAE and Thailand.
Every Chocolate Bar dollar supports the GSD research of Dr David A Weinstein at the University of Florida, where he directs the largest GSD treatment and research programme in the world. Mr Weinstein is upbeat about Jonathan’s future: “Our treatment is working and I expect Jonah to do very well.”
