Student with rare disease graduates high school while using telepresence robot
By Cecil Hannibal
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FAIRFIELD, California (KCRA) — Aaron Phelps, a senior at Rodriguez High School in Fairfield, graduated high school after years of resilience, while attending classes virtually through a telepresence robot.
Phelps was born with Type 1 spinal muscular atrophy, a rare and devastating childhood disease that causes motor neurons to die. His mother, Meri Stratton, recalled the moment she realized something was wrong during a routine checkup when Aaron was 2 months old.
“He was sitting on my lap at the pediatrician’s office in Davis. His arms and legs were just hanging by his side,” Stratton said.
She was referred to a neurologist, who delivered heartbreaking news.
“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,” Meri said.
Doctors told Meri her son would not survive.
“They told you your son was going to die?” asked KCRA 3’s Cecil Hannibal.
“Absolutely, without question,” Meri said.
Meri turned to prayer and research, eventually connecting with researchers at Stanford and the University of Utah who were working on an experimental drug. The treatment kept Aaron alive through his first birthday, his first grade and beyond.
Aaron is mentally like any other student, but SMA caused him to lose complete mobility. He’s not immunocompromised, but any virus or infection that affects his lungs could send him to the hospital, according to his mother.
In elementary school, his parents discovered the idea of a telepresence robot through another family whose child has SMA.
Aaron’s journey with SMA inspired him to create a documentary about his life as one of the few SMA survivors his age.
“This is how I go to school. I have always gone to school virtually since kindergarten. During COVID, everybody went to school the way I do, and I didn’t feel so alone,” Aaron said in the film.
The documentary gained international recognition, being shown in Berlin and at the Catalina Film Festival, where a tree was planted in his honor, according to his mother.
Aaron graduated from Rodriguez High School on June 5 and now plans to attend Arizona State University online.
He dreams of working as a disability advocate for Disney.
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