How an Antioch teen's inspiring story dealing with a rare disease became a children's book
Like the new children's book based on his life, Will Barr brims with positivity — despite the fact the Antioch teen has more to complain about than most.
Will, 15, has Bardet-Biedl syndrome, a rare genetic condition that may eventually leave him blind. But that hasn't marred his outlook, which shines through on the pages of “Will It,” which he helped create with author Courtney Kotloski and illustrator Natalie Sorrentino.
“I like contributing to society, and telling my story to people is showing that even when people think their lives have been severely harmed, that isn't true and they can still do the things they love,” Will said.
The book is the third in the “Gnat and Corky” series that grew out of a blog Kotloski and Sorrentino launched together to highlight the stories and spirit of real children. The pair met through Sorrentino's husband, who was Kotloski's boss at her day job.
“(‘Will It') is not a story about a kid who's blind,” Sorrentino said. “It's about fulfilling your purpose.”
Will learned he had Bardet-Biedl syndrome when he was 5 years old. There isn't a cure for the condition, but it can be treated.
“He's a person who literally is not going to let, and has not allowed, blindness to stop him,” Kotloski said. “Everybody's facing something. The worst thing that could happen in life is that you don't go after what you were meant to do.”
Sorrentino said Will's spirit is “relentless,” and it shines through in the book.
“He is who he is, and he's proud of who he is,” she said.
Like Will, Kotloski grew up in Antioch. She went to high school with Will's mother and is amazed at how their alma mater has rallied around Will.
“Just the support from his peers and from his mentors and teachers was pretty remarkable,” Kotloski said.
Sorrentino describes Will as “hysterical” and “kind,” and said his teachers call him the gentle giant “because he is so nice and so tall.”
To write the book, Kotloski and Sorrentino interviewed Will and used his answers to guide how the book was written. Will said they listened carefully to his responses, and it shows.
“The illustrations were cute and intricate, and the words were exactly the type of words you tell your children,” he said. “It takes a very long time for a book to be produced.”
Kotloski and Sorrentino say they're just glad Barr decided to fill out a questionnaire on their website, making them aware of his story.
Next up for Kotloski and Sorrentino is a book about Sorrentino's daughter, Malena. The book is titled “From Malena With Love,” and it follows Malena as she tries to restore color to a drab gray world by giving love out to everyone she knows. It's due out in May.
Like “Will It,” the book has a broader message about being a force for good in the world.
“Even though each child is so unique, the universal messages are all the same,” Sorrentino said.
“Will It” can be purchased online through Amazon and Barnes & Noble.