7-year old boy writes book and raises $750k for his best friend diagnosed with rare liver disease
For many adults, giving words of encouragement and making frequent visits are among the best ways to cheer up a sick friend but for seven-year old Dylan Siegel of Beverly Hills, California, helping a best friend who was diagnosed with a rare disease actually means contributing something to find a cure for the illness.
Dylan's friend, Jonah Pournazarian, was diagnosed with Glycogen Storage Disease (GSD) Type 1b, a rare form of hereditary disorder that prevents his body from processing glucose (sugar) and causes him to have low blood sugar levels that can result in seizures and death.
Jonah's mother said that they have to feed Jonah a mixture of water and cornstarch through a tube in his stomach at exact times to regulate his blood sugar. "We hope we don't miss an alarm clock because he could die. His life is our hands," Lora Pournazarian said.
Researchers at the University of Florida were already working on a cure for the disease. Unfortunately, they were running out of funding. When Dylan learned about this, he became concerned and said he wanted to help raise money to find a cure for the rare disease.
Although his parents told him they can help him organize a bake-sale or a lemonade stand to raise money for Jonah, Dylan said he wanted to write a book.
"He gave us that, 'Don't patronize me' look," Dylan's father David Siegal said. "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.'"
Dylan's family printed the handwritten and illustrated book called "Chocolate Bar" and initially sold 200 copies in school but as word spread, the book has raised more than $750,000 in sales from around the world.
David Weinstein, who studies and treats patients with GSD at the University of Florida, said he was surprised by the outcome of Dylan's efforts. "Boy, have I been shocked," he said in September, when the book reached the $400,000 mark. "'He's raised more money for this disease than all the medical foundations and all the grants combined. Ever."
All the proceeds from book sales and donations are sent to the University of Florida School of Medicine, where researchers are working on a cure and believe they're close to it.
Dylan told his parents that the title of the book "Chocolate Bar" means "awesome". "Disneyland is so chocolate bar," Dylan wrote in his book. "I like to help my friends. That is the biggest chocolate bar."
Weinstein said that because of Dylan's efforts and his book, a cure for GSD is now possible. "It is now reality. It's not just a dream that these children can be cured," he said.