9-year-old Jonah suffers from a rare glycogen storage disease, meaning his liver is able to store sugar but cannot release it.

At 3 a.m. every morning, Jonah’s mother wakes up to feed him a mixture of water and corn starch, without which Jonah could die.

His mother, Lora Pournazarian, stated in an interview with ABC News, “That’s huge anxiety every night. We go to sleep going, ‘We hope we don’t miss an alarm clock because he could die.'”

However, Jonah’s best friend from preschool has done his best to help too.

Dylan Seigel was only 6 years old when he decided he wanted to help raise money to find a cure for Jonah’s disease. Dr. David Weinstein, a researcher of glycogen storage disease at the University of Florida, had almost run out of funding when he heard of Dylan’s plan to help. Weinstein thought the little boy was simply cute and had no idea how much Dylan would help.

Dylan attacked his goal by writing a book called “Chocolate Bar.” The book explains to his parents that the phrase “chocolate bar” means “awesome.” The book starts out with the sentence, “Disneyland is so chocolate bar,” and finishes with, “I like to help my friends. That is the biggest chocolate bar.”

In a little over a year, Dylan’s book raised over $750,000. Each book sold for $20 in all 50 states and in 42 countries. Every single cent went to Weinstein’s research.

Weinstein told ABC News, “Boy, have I been shocked. He’s raised more money for this disease than all the medical foundations and all the grants combined. Ever.”

When Dylan was asked where he and Jonah would be in the next 10 or 15 years, he replied, “High school, and probably his disease would be cured ’cause it’s not going to take like 15 years to be cured.”

 

A Beaverton resident, Madeleine Cook enjoys a passion for reading, running, and the arts. She is currently studying the Great Books at the University of Notre Dame and is interested in eventually teaching.