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Gabe Weil, whose life with muscular dystrophy inspired others, dies at 28

Gabe Weil, in red, on a visit to San Francisco.
provided by Robert Herrera
Gabe Weil, in red, on a visit to San Francisco.

Careening through the streets of Manhattan, Gabe Weil and Bobby Herrera realized they weren’t sure just how they would park a van and trailer full of medical equipment at rush hour.

“He’s laughing, we’re yelling at people in the street … It felt like this very sitcom, New York City moment,” Herrera recalled. “We’re stopping traffic on 44th Street, and everyone waiting in a taxi is losing their mind, and little old Gabe comes wheeling out of this van.”

Although Weil had muscular dystrophy, that didn't stop him from traveling. But on Monday, his journeys came to an end when he died at his family’s Clayton home. He was 28.

The road trip to New York was one of the first that Weil and Herrera took together when Weil was a high school student and Herrera worked as his caregiver. Travel became one of Weil’s passions, and together they would visit San Francisco, Orlando, the Grand Canyon, and countless stops in between.

Weil's friends said this week that they will always admire his spirit and sense of adventure.
“We kind of went and tested out how accessible this country is — is kind of how we looked at it," Herrera said. "He wanted to go somewhere and so we would just figure it out." 

When Weil was a toddler, doctors diagnosed him with Duchenne muscular dystrophy, a severe form of the illness that worsens quickly, and for which there is no cure. But at 25, when Weil surpassed doctors’ expectations for how long he could live, they realized that the diagnosis had been incorrect.

“It became apparent that he had the potential to live until middle age,” said Luke Terrell, who met Weil while taking notes for him during classes at Washington University.

During Weil’s last semester of college, the pair began making a film about his life.

“We wanted to film his graduation, when his nephew was born, things he never thought he would be alive for,” Terrell said. “Whatever he would do, it would be with a sense of urgency, with integrity and passion and love.”

The film’s trailer shows Weil on a trip to Colorado, his hobby of making fresh juice, and the way he carried his nephew on his chest in a carrier.

As a teenager, Gabe asked for the chance to drive a vehicle. In 2005, friends and family arranged for him to drive a van in a parking lot, using a joystick.
Credit provided by Robert Herrera
As a teenager, Gabe asked for the chance to drive a vehicle. In 2005, friends and family arranged for him to drive a van in a parking lot, using a joystick.

“I’m just a guy trying to figure out my purpose in life,” Weil said in the film’s trailer. “Some people call me a medical miracle. I’m not a hero. I’m just Gabe.”

Though Weil, his family and friends were able to watch the film privately, he never saw it premiere. The film, still in post production, will be shown as a private screening during his memorial service,  scheduled for 2 p.m. Sunday at the Chase Park Plaza Hotel in St. Louis.

“Now it’s sort of this final gift that he’s given to the world, to share his story and teach and inspire and motivate,” Terrell said. “As broken as we are all right now, the memorial on Sunday will be a testament to who he was.”

Weil and his family attended the Central Reform Congregation in St. Louis, led by Rabbi Susan Talve. She remembered his sense of humor, which could catch a listener unexpectedly, and his love of music.   

“He filled such an amazing place in everyone’s life who knew him,” Talve said. “He taught us what it meant to be independent, even when you couldn’t walk on your own … He drew us in so that we would remember that everyone has infinite worth and that no one should be invisible, ever.”

Survivors include his parents, Richard and Josephine Weil, and his siblings, Sam Weil, Rodney Hamilton and Amelia Weil. 

Follow Durrie on Twitter: @durrieB

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