March 1, 2014

Seven-year-old Dylan Siegel raises $750,000 to help his best friend Jonah Pournazarian who suffers from a rare genetic condition

Seven-year-old Dylan Siegel raises $750,000 to help his best friend Jonah Pournazarian who suffers from a rare genetic condition -

 

Because of Dylan's efforts, Jonah's rare disease is receiving its first national attention . Jonah Pournazarian (right) holding the book.

In little more than a year, one small boy has raised more than three-quarters of a million dollars to help his sick best friend by selling copies of a book he wrote himself.

Now well on his way to the ambitious goal of $1 million, Dylan Siegal, a seven-year-old from Los Angeles, is selling his book 'Chocolate Bar' to raise funds for Jonah Pournazarian, eight, his best friend who suffers from a rare condition called glycogen storage disease type 1B.

Dylan became concerned about Jonah when he found out researchers were almost out of funding to conduct studies into the disease, an hereditary liver disorder that means the liver can store sugar but cannot release it, causing dangerously low blood sugar levels that can result in death.

Dr David Weinstein, who treats Jonah and studies the disease at the University of Florida, thought Dylan's desire to help was 'cute,' according to ABC News.

'Boy, have I been shocked,' he said.

Dylan's parents suggested that they help him organize a bake-sale or lemonade stand to raise money, but Dylan had much bigger plans.

'He gave us that,"Don't patronize me' look,' Dylan's father David Siegal told KCAL.

'He said, "I want to write a book." Well, hours later he came back to us, slapped down some pages in front of us and said "Here's my book."'

The family initially printed the handwritten and illustrated book at home and sold 200 copies of it at Dylan's school, but word spread and thanks to recent publicity, Dylan's book has raised more than $750,000 in sales in all 50 states and 42 countries around the world.

'He's raised more money for this disease than all the medical foundations and all the grants combined. Ever,' Dr Weinstein told ABC 7.

Whole Foods has donated hundreds of chocolate bars to the cause, and Barnes and Noble hosted Dylan's first book reading in Los Angeles, California, which raised $5,000.

All of the money raised through book sales and donations is being sent to the University of Florida School of Medicine, where a team of researchers is working towards a cure.

'Chocolate bar' is a phrase Dylan uses frequently, and by which he means 'awesome.'

According to Dylan, going to the beach is chocolate bar. Swimming is chocolate bar. And helping his friend Jonah? 'That is the biggest chocolate bar,' concludes 'Chocolate Bar'.

According to Rabin Pournazarian, Jonah’s liver condition affects one in a million children.

He told ABC 7 that most days, his son's only food is a mixture of cornstarch and chicken soup that he is fed through a tube in his stomach.

His mother Lora Pournazarian says that she and Jonah's father Rabin Pournazarian live in fear that they'll sleep through a 3am alarm clock and miss one of the dozen feeds Jonah needs to regulate his blood sugar.

'We hope we don't miss an alarm clock because he could die,' she told ABC 7.

Dr Weinstein says that thanks to Dylan's book, a cure for Jonah's disease is now possible.

'It is now reality. It's not just a dream that these children can be cured,' Dr. Weinstein said.

By Alex Greig

THE DAILY MAIL

 

Touched: The parents of Jonah Pournazarian, Lora and Rabin Pournazarian

Touched: The parents of Jonah Pournazarian, Lora and Rabin Pournazarian

 

Proud parents: Dylan Siegal's mother and father Debra and David Siegal

Proud parents: Dylan Siegal's mother and father Debra and David Siegal

         
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