Kind World: 6-Year-Old Devises Plan To Cure Best Friend's Rare Disease

KELLY MCEVERS, HOST:

Now for a story about a friendship between two boys in Los Angeles. One has an incurable disease and the other one has an ambitious plan to help him. Reporter Erika Lantz of WBUR has the story of Jonah Pournazarian and his friend Dylan Siegel. Here's Jonah.

JONAH POURNAZARIAN: Sometimes it's kind of, like, annoying when kids just stare and stare.

ERIKA LANTZ, BYLINE: Jonah Pournazarian doesn't blame people for staring.

JONAH: I have to take off my shoe and I prick myself and blood comes out. It's my blood sugar tester.

LANTZ: He says his classmates just don't fully understand his liver disease. But his friend Dylan Siegel responds differently.

JONAH: Dylan, like, he doesn't really stare. He just talks to me and we just laugh together and it's really fun.

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?

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DYLAN: A million dollars.

(APPLAUSE)

SIEGEL: And I was like, what? (Laughter) What did he just say? Does he even know what a million dollars is? I mean, he's 6 years old.

DYLAN: I even thought I was a little crazy. But then I'm like, wait, I could do anything I want. I could cure this disease.

LANTZ: Dr. David Weinstein of the University of Florida says Jonah's type of GSD, or glycogen storage disease, is one in a million. Weinstein is one of the few doctors who treat it.

DAVID WEINSTEIN: There's no funding. Honestly, I've come close to giving up numerous times.

LANTZ: But Dylan learned pretty quickly that the stakes were high for Jonah.

DYLAN: He has no white blood cells at all or very, very low.

JONAH: So I can't fight infections.

DYLAN: Whenever he catches something like a cold, he could end up in the hospital.

JONAH: And I'm hypoglycemia.

DYLAN: He has to drink cornstarch every couple of hours to keep his blood sugar high.

LANTZ: Yep, cornstarch every three hours, even at night.

LORA POURNAZARIAN: We set three alarms.

LANTZ: That's Jonah's mom Lora.

POURNAZARIAN: If we miss a feeding, he can have seizures, go into a coma and die.

LANTZ: They've had close calls, which only motivated Jonah's friend Dylan. He took every opportunity to approach people with his book. One of them happened to work in the news media. As word spread, more people bought Dylan's book and dollars started flowing into the fund for Dr. Weinstein's research.

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UNIDENTIFIED WOMAN: A 6-year-old who decided he could make a change in the world.

WEINSTEIN: Twenty-five thousand, I thought that was incredible. And then it went to 100,000.

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UNIDENTIFIED WOMAN: ...You can make a difference.

DYLAN: I love Jonah so, so, so, so, so, so, so, so, so, so, so, so, so, so, so, much.

LANTZ: In the middle of all of this, Dylan's family visited a boy in the hospital with the same disease as Jonah.

SIEGEL: When we went into the boy's room in the ICU, there was a copy of Dylan's book on his bed. Here was 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.

LANTZ: After that death, both families threw themselves into reaching Dylan's million-dollar goal.

DYLAN: I knew that it was going to happen. I just - my instincts told me.

LANTZ: And he was right.

JONAH: Now we have, like, over a million dollars.

WEINSTEIN: I'm still in shock.

LANTZ: That's Dr. Weinstein again.

WEINSTEIN: We are on the verge of treating this disease. And that would not have been possible if this 6-year-old boy hadn't created this book.

LANTZ: The two boys may help some very sick children. But there's something else Dylan and Jonah are looking forward to.

JONAH: Well, I never have a sleepover at, like, someone else's house. 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.

LANTZ: For NPR News, I'm Erika Lantz in Boston.

MCEVERS: Erika Lantz produces WBUR's Kind World series, which explores the profound effect a single act can have on people's lives. You can find more stories at wbur.org/kindworld.

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