A student in Northern California didn’t let a rare disease stop him from graduating high school, attending classes with a telepresence robot, and marking a triumphant end to a unique academic journey.
Aaron Phelps, who attended Rodriguez High School in Fairfield, was born with Type 1 spinal muscular atrophy (SMA), a rare genetic disease that gives patients an average life expectancy of less than 2 years.
His mother, Meri Stratton, said she realized something was wrong during a normal checkup when Aaron was just two months old and recalled when a neurologist delivered the news that her son had SMA.
“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.
SMA is a rare childhood disease that causes motor neurons in the spinal cord to die, which leads to muscle weakness, wasting, and respiratory complications.
Aaron, 18, was able to stay alive after his mother connected with researchers at Stanford and the University of Utah who were working on an experimental drug.
Phelps has spent a majority of his life in the bedroom, but despite his challenges, he felt inspired to create a documentary highlighting his life as one of the few survivors of 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.