Rare diseases

Chocolate Bar

A truly amazing and uplifting story from Kind World from WBUR about a boy with Glycogen Storage Disease Type 1b, his friend and the Chocolate Bar Book.

LANTZ: Dylan is 10 years old now. But this story starts when the boys were in first grade. Dylan’s mom Debra Siegel was driving her son home from Jonah’s house when she told him that Jonah had a rare condition he could die from.

DYLAN SIEGEL: I’m like, oh, my God, I want to help.

LANTZ: That’s Dylan. His mom explained there was no cure and doctors needed money to find one.

DEBRA SIEGEL: And I said, do you want to do a bake sale? Do you want to do a lemonade stand? He’s like, no. He looked at me like I was insane. What horrible ideas.

DYLAN: I’m like, how about I could write a book?

LANTZ: The next day, Dylan took out his markers and made a picture book he dedicated to Jonah. His plan, sell the book to raise money for research.

SIEGEL: He marched in my office and said, here’s my book. Will you go make copies?

DYLAN: Please, please, please, print it, print it, print it, print it.

LANTZ: When he took his books to a school event…

DYLAN: We sold out.

LANTZ: So the next week, Dylan spoke at a PTA meeting.

SIEGEL: Somebody asked him how much money do you want to raise?


DYLAN: A million dollars.

The funny thing is…he did. The Today show reports that he did in fact raise $1m.

More details and Dylan and Jonah’s website is HERE. Please donate.

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