A remarkable celebration took place earlier this month as Aaron Phelps, a teenager from California, marked his high school graduation against all odds. Given a mere 10% chance of surviving childhood due to a rare genetic condition, Aaron has beaten expectations and continues to inspire those around him.
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Aaron’s journey began when he was just two months old. His mother, Meri Stratton, noticed that her baby’s motor skills were not developing normally. “He was sitting on my lap at the pediatrician’s office in Davis. His arms and legs were just hanging by his side,” she recalled. These early signs prompted a referral to a neurologist, who delivered the devastating news that Aaron might have Type 1 spinal muscular atrophy (SMA), a condition that leads to the deterioration of motor neurons and progressive muscle weakness.
Stratton vividly remembers the neurologist’s words: “He said if you get anything, this is the one you don’t want to have, because 90% of the kids die.” This stark prognosis marked the beginning of a challenging journey for Aaron and his family.
After a formal diagnosis of SMA, Meri dedicated herself to finding effective treatment options for her son. She conducted extensive research and ultimately connected with researchers at both Stanford University and the University of Utah, who were in the process of developing an experimental therapy. This treatment has allowed Aaron to achieve milestones that once seemed insurmountable, enabling him to celebrate his first birthday, progress through elementary school, and eventually graduate from Rodriguez High School in Fairfield.
While Aaron’s condition has left him without mobility, his cognitive abilities remain on par with his peers. To accommodate his health needs, particularly the heightened risks associated with respiratory illnesses, Aaron has been attending school virtually since the start of elementary education. He uses a telepresence robot—a device that resembles a computer screen mounted on wheels—to participate in classes from home. This innovative solution has allowed him to engage fully with his education. “This is how I go to school,” he explained using a computer-generated voice in a documentary about his life. “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’s experiences have shaped his aspirations profoundly. He hopes to become a disability advocate, focusing on inclusion for young people with disabilities in various aspects of life. “My wish is for children and teens with disabilities to feel included in their schools, in their neighborhoods, in their communities. I want them to be included in whatever they do,” he expressed in his documentary, conveying a message of hope and advocacy.
Graduating on June 5, Aaron now looks ahead to the future, with plans to attend Arizona State University online. His goal is to work as a disability advocate for Disney, a dream that reflects both his passion for storytelling and his commitment to making a positive impact on the lives of others.
Aaron Phelps’s story is one of resilience and hope, illustrating that barriers can be overcome with determination, support, and the right resources. His journey serves as an inspiring reminder of the power of perseverance in the face of adversity, encouraging others to dream big and advocate for inclusivity in all areas of life.