At age 5 in kindergarten, Weston failed a routine hearing test. Doctors initially indicated his hearing was normal. He received diagnoses of ADHD and Oppositional Defiance Disorder, which his parents attributed to his high energy and spirited personality. At age 6, a formal hearing evaluation confirmed bilateral sensorineural hearing loss, and he was fitted with hearing aids. His teacher noted mild hand tremors and early learning difficulties.
At age 7, extensive testing was undertaken to identify the cause of the hearing loss. Brain MRI and heart MRI both came back normal. At age 9, full genome testing was recommended — and on August 22, 2025, SMA-PME was confirmed. A 24-hour EKG detected mild absence seizures; seizure medications were initiated with good early control. Subtle muscle loss has been observed during active play, though it has not yet significantly impacted his ability to participate in sports.
Weston's diagnosis is among the most recent in our community. His family is just beginning a journey that no parent should have to take — but they do not take it alone. They join a global network of families fighting for the same cure, united by hope and by the children who inspire them every single day.
