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Film shows St. Louisan Gabe Weil’s life with severe muscular dystrophy, and his accomplishments

Luke Terrell, Amelia Weil and Brian Chao joined St. Louis on the Air host Don Marsh to discuss the documentary "Gabe," about Gabe Weil.
Kelly Moffitt | St. Louis Public Radio
Luke Terrell, Amelia Weil and Brian Chao joined St. Louis on the Air host Don Marsh to discuss the documentary "Gabe," about Gabe Weil.

When St. Louisan Gabe Weil was a child, he was diagnosed with Duchenne muscular dystrophy, a severe form of the hereditary disease that decreases muscle mass and produces progressive weakness over time. Life expectancy for those with the disease is short, but Weil made it his goal to get a college degree.

In December 2013, Weil did just that, graduating from Washington University, at which point doctors also told him he was misdiagnosed and might live well into his 50s. He had to start rethinking how he would approach his life knowing he had many more years.

The story of how he did that is now enshrined in “Gabe,” a documentary that will screen Thursday night as part of the St. Louis Filmmakers Showcase. Although the film was finished in 2015, it is all the more poignant today, nearly a year after Weil died at age 28.

On Thursday’s St. Louis on the Air, three people associated with Weil and the documentary joined host Don Marsh to share Weil’s inspiring story and his impact.

Luke Terrell, who directed “Gabe,” initially met Weil in college when he worked as his note-taker in class. Amelia Weil, Gabe’s sister, also joined the program as did Brian Chao, a friend of Weil’s who also lives with a form of muscular dystrophy.   

A screenshot from "Gabe," which will be screened as part of the St. Louis Filmmakers Showcase.
Credit Cinema St. Louis
A screenshot from "Gabe," which will be screened as part of the St. Louis Filmmakers Showcase.

While Weil was unable to drive or walk, Chao said he developed friendships and a network of people he could rely on 24/7 and that allowed him to do almost everything he wanted, like going out to lunch every day, running errands, attending music festivals and taking road trips.

“He did anything he wanted to do,” Chao said. “Even though his disability was limiting for what he could do physically every day of his life, it did not limit him from living his life. He truly lived each day to its fullest.”

Early on, many people discounted Weil’s ability. He was initially tested in school in the 30th percentile but through the belief of a persistent fourth-grade teacher who worked with Weil to accomplish the same things as the rest of the class, he started to test in the 90th percentile.

“A lot of times when we see someone with a physical disability we conflate that and assume there is mental deficit,” Terrell said. “People did that with Gabe, but he was quite a bright young man.”

The film is in many ways a testament to inclusion, focusing on the ways that Weil, while living with a severe disability, was able to accomplish quite a bit, graduating from college and making plans to start a juice bar, which would help feed people who struggled to chew foods.

“All any of us ever wanted was for Gabe to be whoever he wanted to be,” Amelia Weil said.

Listen as the group discusses Gabe Weil’s life, the documentary and inclusion in regard to people with disabilities:

Related Event

What: Cinema St. Louis 2017 St. Louis Filmmakers Showcase Presents
When:  7:30 p.m, Thursday, July 20

Where: Tivoli Theatre, 6350 Delmar Blvd., St. Louis
More information.

St. Louis on the Air brings you the stories of St. Louis and the people who live, work and create in our region. St. Louis on the Air host Don Marsh and producers Mary EdwardsAlex Heuer and Kelly Moffitt give you the information you need to make informed decisions and stay in touch with our diverse and vibrant St. Louis region. 

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Kelly Moffitt joined St. Louis Public Radio in 2015 as an online producer for St. Louis Public Radio's talk shows St. Louis on the Air.