Boy Raises $750,000 to Find Cure for Best Friend’s Rare Disease

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He is only 7, but Dylan Siegel knows what it means to be a true friend.

Best friends Jonah Pournazarian and Dylan Siegel. (Credit: David Siegel)

The Los Angeles boy raised $750,000 over the past year to help his best friend, Jonah, in his battle against a rare life-threatening liver disease.

We first introduced you to the dynamic duo one year ago when Dylan told his mom he wanted to write a book to raise money to find a cure for Glycogen Storage Disease Type 1b.

The result was “Chocolate Bar, The Book.”  For Dylan, chocolate was more than just sweet, it was code for “awesome.”

“I like to help my friends, that is the biggest chocolate bar,” Dylan said.

Glycogen Storage Disease Type 1b affects one in a million people.

“Jonah was diagnosed at 6 months old, and his body isn’t able to digest sugars,” Rabin Pournazarian, Jonah’s dad told KTLA in 2013

To keep Jonah’s blood sugar levels from spiking, the Pournazarians monitor everything Jonah eats.

His parents said Jonah must be fed a special formula through a tube in his stomach each day to keep him healthy.

“We have to set our alarm clocks and wake him up each night at 3 a.m. for a feeding,” said Lora Pournazarian, Jonah’s mom.

“His immune system is also weak, so we have to give him a shot to make him stronger,” she said.

Family members said every cent raised by the book goes to medical research to find a cure for GSD.

Dylan told KTLA last year that he wanted to raise $1 million and he appeared to be well on his way to reaching his goal.

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