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Miracle Walk: SMA Diagnosis Overcome by Early Treatment
6 Sep
Summary
- Newborn screening identified Jesse's rare SMA condition at 16 days old.
- Early intervention with Evrysdi and Zolgensma showed limited progress.
- High-dose SPINRAZA treatment led to independent walking within weeks.
When Jesse was born in 2024, his mother, Lupita Vasquez, initially had a normal pregnancy. However, a routine newborn screening blood test revealed Jesse had spinal muscular atrophy (SMA), a genetic disease causing progressive muscle weakness.
Diagnosed with Type 1 SMA at just 16 days old, Jesse began treatment with Evrysdi, followed by Zolgensma gene therapy. Although these interventions helped, his progress in development, such as crawling or walking, remained limited.
Their neurologist then recommended a high-dose SPINRAZA treatment, a regimen approved by the FDA earlier in 2026. Jesse became the first patient in Texas to receive this higher concentration of the drug, which is administered directly into the spinal fluid.
Remarkably, after the initial high-dose SPINRAZA injections, Jesse began to stand and cruise along furniture within weeks. Approximately one month later, he was walking independently, a development that brought immense joy and relief to his family who had feared he might never walk.
Now 2 years old, Jesse is a thriving, adventurous child, his SMA diagnosis a stark contrast to his current energetic personality. Vasquez advises other parents facing similar diagnoses to seek support and avoid overwhelming online searches, emphasizing a day-by-day approach.
