Chocolate bar

Depressing news is easy to find these days. Depressing news with a positive side, not so much. So it was a change of pace when I was depressed and then inspired upon hearing this story recently. It isn’t new. You may have read about it or seen it on the evening news a couple of years back. But it was new to me, and I thought it was worth mentioning here.

Jonah Pournazarian, 10 years old, has glycogen storage disease, or GSD Type 1. He is the statistical 1 in 1,000,000. There is no cure. Basically, those with GSD Type 1, an inherited genetic deficiency, are missing the enzyme needed to release into the blood stream glucose from the glycogen stored in the liver after eating. Without this release into his blood, Jonah’s blood sugar can drop drastically, even fatally. His white blood cells are critically low, and his resistance to infection is severely diminished. At this time, the only solution to controlling his blood sugar is administering ordinary corn starch and water, given strictly every 3 hours, day and night. His parents bear this burden and the many other problems connected with the disease stoically, and so does Jonah, although he’s bothered a bit when other students stare while he checks his blood sugar at school.

Dylan Siegel, also 10, doesn’t stare. He chats with Jonah instead. They have been best friends since kindergarten, and they relish each other’s company, at school or elsewhere. They laugh a lot, and they have their own way of describing things sometimes. A favorite expression of the two is “chocolate bar.” When something is awesome, it’s chocolate bar. You could describe their friendship that way.

When Dylan learned, at the age of 6, that his friend had an awful, incurable illness, he immediately wanted to help. He decided to make a book, hand-lettered and illustrated. He called it “Chocolate Bar.” His parents printed out copies for him, and he began to sell them. He was allowed to address the PTA, and when someone asked him how much he wanted to raise, Dylan said “a million dollars.” The audience laughed, and even Dylan later said he thought setting such an extravagant goal was a little silly. But any amount would help. Word gradually spread, and money gradually began to come in. This surprised and encouraged Dr. David Weinstein, who heads research into GSD Type 1 at the University of Connecticut. The research into this rare disease had little financial support, and Weinstein says he had sometimes become discouraged and ready to quit.

If you have the experience of caring for your own child with extreme and permanent medical problems, you understand the exhaustion, the worry, and the unending current of grief just below the surface. And you can imagine the gratitude Jonah’s parents must have felt when an outsider, even if only a 6-year-old small package of energy, good humor and love for his best friend, undertook to help ease the load. Four years later, Dylan is still pushing his project to help find a cure for Jonah’s disease. Yes, others are helping, but he is the originator, the spark, and the key to the whole thing. (If you would like to donate to the cause, Google “chocolate bar book” for information.)

Jonah’s parents are not the only ones who are grateful for Dylan’s efforts. Dr. David Weinstein is awestruck by the results of this young dynamo’s idea and his drive. The infusion of funds promises to encourage other donors and to put the research program into high gear. Because the funding has not been insignificant. Remember how the PTA audience laughed when Dylan said his goal was to raise a million dollars? They aren’t laughing now. At least not in disbelief. The project has long since passed one million dollars and is still producing. And the friendship of Dylan and Jonah is still an inspiration. There is only one phrase that can adequately describe the friendship and its practical result: “Chocolate bar.”

This story was originally published October 29, 2016 at 7:22 PM with the headline "Chocolate bar."