8-Year-Old Raises Money to Cure Best Friend’s Illness
After reading this, you are going to hope you have a friend like Dylan Siegel – and strive to be a friend like him.
At eight years old, Dylan is an author with almost $1 million (£630,000) to his name. Or he would be if every single penny of book sales didn’t go on research for his best friend’s illness.
Dylan’s book is called Chocolate Bar, a phrase that he uses in place of “awesome”. Various places and activities are described as “chocolate bar” in the book, but helping his friend Jonah? “That is the biggest chocolate bar.”
When Jonah Pournazarian was only six months old, he was diagnosed with glycogen storage disease type 1b (GSD1b).
GSD is an inherited condition that causes tiredness and weakness, along with low blood sugar levels. It is caused by a problem with one of the enzymes involved in the conversion process of glucose (blood sugar) to glycogen (stored sugar) and vice versa. This can either lead to dangerously low blood sugar or a build-up of it in the liver and muscles.
GSD affects around 1 in 100,000 people, but 80% of those cases are with type 1a. But 1b, the GSD type that Jonah has, only occurs once in a million people.
The condition means that instead of enjoying meals like he ought to be able to, Jonah needs to be given a special formula. This is fed to him several times a day through a tube in his stomach to make sure that his blood sugar levels stay regulated.
When Dylan found out that funding for research into the disease was running low, he wanted to do something to help his friend. His parents suggested that he organised a lemonade stand or bake sale like other kids his age do when they want to raise money for something. But Dylan had much bigger plans.
“He said, ‘I want to write a book,’” explained Dylan’s dad, David. “Well, hours later, he came back to us, slapped down some pages in front of us and said, ‘Here’s my book.’”
Dylan and written and illustrated a whole book about things he thought were “chocolate bar”. The family initially printed out copies at home and sold 200 books at the boys’ school in California in the US.
Word spread and publicity built. Soon Dylan and Jonah were able to sell the book in all 50 of the US states and in more than 60 countries around the world, so far selling more than 21,000 copies. And neither of the boys has pocketed a single penny of the money.
All proceeds from sales of the book and related merchandise have gone straight into a special research fund at the University of Florida. Dr David Weinstein, who runs the GSD Program at the university and also treats Jonah, oversees the funds.
At first, Dr Weinstein just thought that Dylan’s plans were a nice gesture… But now: “He has raised more money for this disease than all the medical foundations and all the grants combined,” he said. “Ever.”
He said that thanks to the book, a cure for GSD is no longer just a dream, but a reality.
When Chocolate Bar was first released two years ago, the aim was to raise $500,000. Having completely bypassed that amount, the goal is now $1 million.
“I feel amazing that [Dylan] has wrote (sic) this book for me to help me find a cure, find a cure for my disease,” says Jonah on the whole matter.
And Dylan’s advice for other kids? You can do anything you put your mind to – and if you can’t, just ask your parents for help.
“I am so, so, so excited to be able to help my friend,” he exclaimed. “I am thankful to people everywhere for letting me share my story and inspire kids to change the world.”
If you would like to find out more about Dylan and Jonah’s story, check out the Chocolate Bar website here.