Updated: November 20, 2025
Weston is fun-loving and energetic in school, especially in baseball. In school, he wants just to be like every other child. He doesn’t let his hearing difficulties hold him back.
Born: December 2015
First symptoms: 5 years old
- Failed hearing test in kindergarten. Doctors said hearing OK.
- Diagnosed with ADHD and Oppositional Defiance Disorder (ODD)
- Parents thought this was the reason for failed hearing at school.
Age 6:
- Failed hearing test at doctor’s. Diagnosis: Bilateral sensoroneurosis
- Fitted with hearing aides
- At school, teacher noticed beginning of learning deficiencies and mild hand tremors. Parents attributed it to his medications.
Age 7:
- Still searching for the reason behind Weston’s hearing loss
- MRI of brain–OK
- MRI of heart–OK
Age 9:
- Doctors recommended full genome test
- Diagnosis: SMA-PME on August 22, 2025
- Parents shocked. Read up on SMA-PME and began to look for those symptoms in their son.
- 24-hour EKG detected mild absence epilepsy. Started seizure medications and the seizures are well controlled.
- Subtle signs of muscle loss, mostly when in active play with children. Does not affect his drive to play sports.
SMA-PME Research 