The Boy Who Raised a Million Dollars

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December, 2016

The Boy Who Raised a Million Dollars

by Larry

A six-year-old fellow felt badly that his first grade buddy was getting stared at or teased just for being different, having to test his blood multiple times through the day, having to drink cornstarch every couple or three hours, even at night, and having almost no white cells at all, so his threshold for dealing with infection is really low. He understood the problem was the mean kids did not know his buddy like he did or they would have been more kind. He learned that his pal had a rare liver disease that always kills people, but that research was being done to find a cure, only it costs a lot, and the money was simply not there for that problem to be solved.

Jonah Pournazarian with Dylan Siegal (wbur.org)

So right then and there he decided to make a difference, and he did. Six-year-old Dylan Siegel wrote a book, Chocolate Bar, that tells the story of his friend, Jonah Pournazarian's illness, explains it in words and pictures so just about everyone can understand it, and he set about selling enough copies to raise the money needed to find the cure. They may not be there yet, but four years later Dylan's book has now raised over $1,300,000. From the start, his book, which he completed in like one day and had his mother make more copies of on the home printer, sold like hotcakes at a school event. So he was asked to speak at a PTA Meeting. And little 6-year-old Dylan got up and told the members what he wanted to do and why and showed them his books. Someone in the audience asked him how much he wanted to raise, and he immediately said "A million dollars."

David Weinstein, a doctor who works with this seldom heard of disease, glycogen storage disease (GSD), said he has almost given up many times because there is just no funding. All of a sudden, thanks to Dylan's efforts, he says they are on the cusp of successfully treating GSD, and this would not have been possible without Dylan Siegel, his idea, and the book. When Jonah gets his cure, and fingers crossed that he does, he and Dylan plan a big party, with games, TV, and lots of fun, like any pair of normal friends.

We may think that we do not really make a difference. Among so many billions, what can one person do? Yet we can each get involved in positive ways, and who knows where it may lead? Today, one may hear of some cool idea for how things might be improved and then hear someone remark: "Oh, that is so 'Chocolate Bar'!" Well said.

Copies of Chocolate Bar available at http://www.chocolatebarbook.com/.

Primary source: 6-Year-Old Devises Plan to Cure Friend's Rare Disease. Erika Lantz on NPR - All Things Considered; October 24, 2016.