Triumph Against Odds, Future Advocate
California Teen with Rare Disease Graduates, Now Plans Disability Advocacy for Disney
Anonymous
Aaron Phelps was given a less than 10% chance of surviving past his second birthday. This month, he walked across the stage at Rodriguez High School in Fairfield, California, and graduated WSAW.
Aaron has Spinal Muscular Atrophy (SMA) Type 1 — a rare genetic disease that kills motor neurons, the nerve cells that control movement. Doctors diagnosed him at a routine two-month checkup in 2008. Without treatment, most infants with SMA Type 1 do not survive to age two KTTC.
A Mother's Research Changed Everything
When Aaron's mother, Meri Stratton, got the diagnosis, she turned to prayer and research. She found scientists at Stanford University and the University of Utah who were running early clinical trials for an experimental SMA drug. That drug kept Aaron alive through his first birthday, then his first day of school, then his teenage years Fox 34.
Dr. John Day at Stanford performed some of the first infant clinical trials for SMA treatment. Dr. Kathryn Swoboda at the University of Utah also helped shape Aaron's early care. The first FDA-approved SMA drug, Spinraza, did not get approval until 2016 — eight years after Aaron was born. He was among the first wave of children kept alive by experimental trials that made that approval possible KXII.
A Robot Helped Aaron Go to High School
Aaron could not always be in a classroom. His disease made him physically vulnerable to infection. So years before remote learning became normal, Aaron used a telepresence robot to attend Rodriguez High School. The robot moved through the hallways and sat in class for him while he participated from home WSFA.
He also made films about his experience. In October 2023, his documentary, "Slanted Perspectives: My Life with SMA," was selected for the All American High School Film Festival in New York City. Aaron said he shares his story with "hope for children with disabilities that they could find a place of belonging in the world" WTOK.
SMA Screening Now Reaches 99% of U.S. Newborns
Aaron's story is bigger than one graduation. When he was born in 2008, there was no standard newborn screening for SMA. Doctors caught his diagnosis at two months. Today, more than 99% of U.S. newborns are screened for SMA at birth. Babies now get treatment within weeks of being born — not months WIBW.
Families like Aaron's helped push for that change. Advocacy groups credit "pioneer" patients — the first children to survive on experimental drugs — with building the case that early screening saves lives. Aaron's 18 years of survival is part of that evidence KOLOTV.
Aaron's Next Goal: Disability Advocacy at Disney
Aaron plans to study disability advocacy at Arizona State University online. His long-term goal is to work for The Walt Disney Company, focusing on disability representation and making spaces more accessible WOWT.
He wants to build a future where students like him feel seen. "I share my hope for children with disabilities that they could find a place of belonging in the world," Aaron said Fox 5 Vegas.
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