Lake Forest family celebrates special night as community raises awareness for rare condition
Local high school students performed a song in their honor—and it was all based on a book written by Anna's younger sister.
What we know
The heartwarming evening marked a full circle moment for the Odlaug family, who lives in Lake Forest.
During their spring concert on Monday evening, Lake Forest High School students performed a song called "Where do the Colors Go?" that was based on a story written by 5-year-old Lily Odlaug.
Anna and Lily Odlaug's mom, Kim, attended Lake Forest High School, and thanks to a couple of her former classmates—this vision was brought to life.
"It's really powerful and we're just so grateful to be part of such a great community. Everyone is so caring and supportive, and they just really go out of their way to not only help us with Anna, but to enjoy Anna and all of her gifts," said Kim Odlaug.
Anna, who is 7 years old, was diagnosed with Dravet Syndrome—a rare form of epilepsy—when she was about nine months old.
The condition is characterized by prolonged seizures often caused by heat.
"We hadn't heard of it when she was first diagnosed. This has given us a great opportunity to help create awareness around what Dravet Syndrome is," said Andrew Odlaug, Anna's dad. "Lily has really embraced the opportunity to pretty much represent her sister, Anna, in this process by helping to write the story and do the illustrations that come along with it."
To raise awareness about Anna's condition, the Sing Me a Story Foundation connected with the Odlaugs. The organization's co-founder attended Lake Forest High School with Kim Odlaug and reached out to make the project a reality.
To get started, Lily wrote a book about their family as butterflies on an adventure.
The composer who transformed Lily's story into sound, David Hamilton, is also a Lake Forest High School graduate. He worked with the school choir during rehearsals in preparation for Monday's concert entitled, 'Hope Lingers On.'
"The song was commissioned by the Sing Me a Story Foundation. They pair composers to bring to life stories by children that write these most amazing, magical stories, and I was lucky enough to be asked to write this piece, so it was a real honor to bring that to life," Hamilton said.
On Monday evening, the students debuted their hard work during a concert in the school's Raymond Moore Auditorium—a moving performance for all involved.
What's next
Through fundraising efforts, Anna's family has raised more than $2.5 million for the Dravet Syndrome Foundation.
Each year, they organize 'Dance for Dravet'—their largest annual benefit—which will be held in St. Louis on October 26, 2025.
The Source
The information in this article was reported by FOX 32's Kasey Chronis.
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