Born in May 2019, Megan is one of two sisters in the same family living with SMA-PME — a reality that has shaped their family's world in profound ways and made their fight all the more urgent. At age 2½, Megan began falling repeatedly and struggling to stand. Hospitalizations followed. Her family searched for answers.
At age 3, the diagnosis arrived: SMA-PME. With it came a cascade of new challenges. Epilepsy began. Walking independently was no longer possible without a walker. Choking episodes led to the placement of a feeding tube. In a matter of months, life had been restructured around her needs.
"Two sisters. One family. The same rare genetic condition — and a love that refuses to be overwhelmed by it."
At age 4, severe epilepsy required multiple rounds of medication trials before finding a regimen that helped. By age 5, her condition had begun to stabilize — though pneumonia remained a recurring threat. Her family made the decision to transition to home-based palliative care, choosing comfort, closeness, and dignity on their own terms.
At age 6, Megan's epilepsy is controlled with medication. Viral infections come and go, but her overall health holds steady. Her sister Sofia walks the same road beside her. Together, they are the reason their family fights, and the reason this research cannot wait another day.
Repeated falls, difficulty standing; hospitalizations begin.
SMA-PME confirmed; epilepsy begins; walking requires a walker; feeding tube placed.
Severe epilepsy; multiple medications trialed.
Condition stabilizes; transition to home palliative care; recurring pneumonia.
Stable with medication-controlled epilepsy.
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