Karina was a joyful, active little girl — and at age 3, her mother began to notice something was changing. Standing independently had become difficult. It was the first sign, quiet and easy to miss. What followed was nine months of rapid, heartbreaking progression that no family should have to witness.
Within two months of those first observations, Karina had stopped walking with confidence. By the third month, she needed someone to hold her hand just to take a step. By month six, walking — even with assistance — was no longer possible. Epilepsy had begun. And by month nine, her diagnosis was confirmed: SMA-PME. She had lost the ability to walk entirely.
"Karina dreams of wearing a ballet tutu and dancing professionally. Her family fights every day to make that dream possible."
Today, Karina can sit and lie down. She manages ongoing epilepsy and neck-tipping complications. But she has not lost her spirit. She loves unicorns. She still dreams of ballet. She brings light into every room — which is exactly why she is at the heart of everything this research is working toward.
First symptoms observed — difficulty with independent standing.
Stops walking with confidence.
Requires hand-holding to walk.
Cannot walk even with assistance; epilepsy episodes begin.
SMA-PME confirmed; complete loss of walking ability.
Can only sit and lie down; ongoing epilepsy and neck-tipping management.
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For every child like her.