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Since they first met in preschool, Dylan Siegel has watched his friend Jonah Pournazarian check his blood sugar many times.
"I have to take off my shoe, and I prick myself, and blood comes out," 10-year-old Jonah says. "Sometimes kids just stare, because they just don't know what it’s about. It's kind of weird, people staring. Dylan, he doesn’t really stare, he just talks to me. And we laugh together, and it’s really fun."
Dylan is 9 years old now, but this story starts three years ago, when the boys were in first grade in Los Angeles.
Dylan’s mother, Debra Siegel, was driving her son home from Jonah’s house when she told him that Jonah had a rare liver disease he could die from. She explained there was no cure, and doctors needed money to find one. Dylan said he wanted to help.
"I said, ‘Great! I love that!'" Debra remembers. "'Do you want to do a bake sale? Do you want to do a lemonade stand?’ He looked at me like I was insane. What horrible ideas. Later that night I was putting him to bed, and he said, ‘I thought about what I want to do for Jonah.’ I didn’t even think he would bring it up again. He said, ‘I’m going to write a book.’”
The next day, Dylan took out his markers and wrote a storybook he dedicated to Jonah. He titled it “Chocolate Bar,” a phrase Dylan says means "awesome." Each page listed something “chocolate bar,” or awesome, like Disneyland, swimming or helping his friends. He had a plan: sell the small paperback to raise money for research. First he needed some parental help.
“He marched into my office and said, 'Here’s my book. Will you go make copies?'” Debra says.
“They were like, 'Uh, OK, we’ll do it later, blah blah blah,'” Dylan says. “I'm like, ‘Please, please, please, print it, print it.’ Every day. A week before our special school event I was like, 'Can I please sell it our school event?'"
A week later, Dylan sat behind a table with his freshly printed books and some chocolate bars and sold out. He’d raised more than $5,000, but Dylan dreamed bigger.
The next week, Dylan spoke at a PTA meeting. Someone asked how much money he wanted to raise, and people gasped at Dylan's simple response.
"A million dollars."
“I was like, what did he just say?” Debra says, laughing. “I mean, he’s 6 years old. I asked him, ‘Do you even know how much a million dollars is?’ He’s like, ‘It’s half a Bugatti!’”
Dylan says even he wondered if he was crazy. “But then I’m like, wait. I can do anything I want. I can raise a million dollars. I could cure this disease.”
It’s a daunting proposition for anyone, let alone a 6-year-old, and this particular disease posed a major challenge. Dr. David Weinstein, of the University of Florida, says Jonah’s type of glycogen storage disease, GSD Type 1b, is one in a million, and details about the illness are rarely part of medical school curriculum. Jonah and his family visit Weinstein for checkups every year, as he’s one of the few doctors who treat and research GSD.
With little funding for research for the obscure disease, Dr. Weinstein admits he had come close to giving up multiple times.
Dylan learned all he could about Jonah's condition. “He has no white blood cells at all, or very, very little,” Dylan explains. “So whenever he catches something like a cold, he could end up in the hospital. And he has to drink cornstarch mixed with water every couple of hours to keep his blood sugar high.”
That’s right. Cornstarch every three hours, even at night, by mouth or through the G-tube in Jonah’s stomach. The Pournazarians know that if they sleep through an alarm in the middle of the night, Jonah could have seizures, go into a coma and die. That fragility motivated Dylan. He took every opportunity to approach people with his book. One of them happened to work in the news media and picked up the story. Then word started to spread.
"People told friends, their friends told their friends, their friends told more friends," Dylan says. Both families started getting calls from TV shows, radio stations, newspapers. Dr. Weinstein watched as money came into a research fund. "Incredible," he thought at the $25,000 mark. It kept rising.
In the middle of all this, Dylan’s family heard from the mother of a boy in the hospital with the same disease as Jonah, and they decided to visit. The moment has stayed with Debra ever since.
"When we went into the boy’s room in the ICU, there was a copy of Dylan’s book on his bed. The mom told us how much Dylan’s book had meant to him, and that he had three copies of Dylan’s book and that he was so inspired by Dylan. Here was a kid who was fighting for his life, and a mom who had spent her last 13 years trying to keep him alive. About a week later he passed away. And it was really hard. It was really painful."
After that death, both families threw even more of themselves into reaching Dylan’s million-dollar goal.
"My parents and Jonah’s parents worked their butt off," Dylan says. "I knew that it was gonna happen. My instincts told me."
He was right. Two years after he'd written his book, they surpassed $1 million. They've sold more than 26,000 copies of Dylan's book in more than 60 countries, with all of the proceeds going to GSD research.
"I'm still in shock," says Dr. Weinstein. He's now planning human trials for GSD gene therapy and says his team has found treatments for mice with Jonah’s rare type. "We are on the verge of curing or treating this disease, and that would not have been possible if a 6-year-old boy hadn’t created this book."
"I want to tell people that you can make a difference in the world," says Dylan. "Anytime you want."
Dylan may make that difference in the lives of some very sick children, but there’s something else he and Jonah are looking forward to.
"Well, I never [get to] have a sleepover at someone else’s house," Jonah says. "Once I get cured, Dylan and I made plans to have a huge slumber party, and just have fun. Play games, watch TV. Just us two."
You can learn more about Jonah and Dylan at ChocolateBarBook.com.
Kind World is a project of the WBUR iLab, sharing stories of the profound effect that one act can have on our lives. Listen on air, online or subscribe to the podcast. This episode includes music by Podington Bear, Ben Seretan and Chris Zabriskie.
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