A Northern California student has celebrated a milestone many once feared he might never reach: graduating from high school after years of attending classes with the help of a telepresence robot.
Aaron Phelps, an 18-year-old student at Rodriguez High School in Fairfield, was born with Type 1 spinal muscular atrophy, or SMA, a rare genetic disorder that is often associated with an average life expectancy of less than 2 years.
His mother, Meri Stratton, said she first sensed something was wrong during a routine checkup when Aaron was only two months old. Soon after, a neurologist confirmed the diagnosis that would reshape their lives.
“When he first came into the room, one of the things he mentioned was SMA. He said if you get anything, this is the one you don’t want to have, because 90% of the kids die,” Stratton told KCRA 3.
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SMA is a rare childhood disease that destroys motor neurons in the spinal cord, causing progressive muscle weakness, muscle wasting and serious respiratory complications.
Aaron survived after Stratton connected with researchers at Stanford and the University of Utah who were developing an experimental drug, a step that became a critical part of his medical journey.
Although Phelps has spent much of his life in his bedroom because of the disease, he has continued to find ways to share his story. That includes creating a documentary about his life as one of the few people to survive with SMA.
“This movie shows how my muscle disease, Spinal Muscular Atrophy (SMA) has affected my life and how I hope people can view kids with disabilities,” he wrote.
His film was chosen as a finalist for the All-American High School International Film Festival in New York City in 2023, making history as one of the first film students in his school district to participate.
Upon graduating, he plans on attending Arizona State University and dreams of working for Disney as a disability advocate.
