Health

Young boy raises $600k to cure his best friend

Dylan Siegel, 7, is on a mission to find a cure for a rare liver condition that threatens his best friend's life.
Photo: Facebook, ABC’s World News with Diane Sawyer

Dylan Siegel was in pre-school when he decided to help his best friend, Jonah.

Jonah suffers from a rare genetic condition called Glycogen Storage Disease (GSD) Type 1b, a liver condition that exposes him to dangerously low blood sugar levels. At present the condition is incurable, leaving Jonah to rely on a cornflour mixture that he drinks all through the day and night.

Jonah’s mother, Lora Pournazarian, choked back tears as she told ABC’s World News with Diane Sawyer, “We just hope that we don’t miss an alarm, or he could die.”

After research at Health Shands Children’s Hospital at the University of Florida stalled when funding dried up, Jonah’s best friend from pre-school, Dylan Siegel, decided to take matters into his own hands.

At the age of six, he wrote a book called The Chocolate Bar Book and insisted his parents make copies, which he sold for $20 each.

Dylan and his best friend Jonah. Photo: Instagram

Since the initial sale of 200 copies at a school event, the movement has gained momentum to the point where the boys have garnered national media attention, released a merchandise range and recently surpassed $600,000 in fundraising. Every cent is reported to be channelled to the Florida laboratory.

Dylan’s mum, Debra Siegel, says her son was so insistent that she and her husband had to support him. “We were really really thrilled to get behind this project because we knew it would send a message out to other children that you have power,” she said.

Jonah’s parents say they have been overcome by this gesture from a child and the support for the family through book sales. “Dylan has touched us so much. It’s beautiful. It’s so beautiful,” said Lora.

“It’s been an amazing amazing journey for us as parents to see other parents’ child do this. We got a little choked up with emotion,” said Jonah’s dad, Robin.

The Chocolate Bar Book is a child’s listicle of things that Dylan finds “awesome”. He supplants the adjective “awesome” with a more original metaphor, “chocolate bar”, an idiosyncrasy that appears to have preceded the book. Among the things that are “so chocolate bar” are fireworks, Halloween and the Lakers basketball team. But “the biggest chocolate bar’ is helping friends, Dylan writes.

Dylan’s plea for help.

His fundraising target is $1 million.

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