Within two months of her first symptoms, Karina stopped walking with confidence. By three months, she required someone to hold her hand just to walk. By six months, she could no longer walk even with assistance — and epilepsy episodes had begun. By nine months, she received her SMA-PME diagnosis, at which point she had completely lost the ability to walk.
Today, Karina can only sit and lie down. She continues to experience epilepsy and neck-tipping issues that require ongoing management. The medical realities of her daily life are profound — and yet they do not define her.
Because through it all, Karina radiates joy. She is a little girl who loves unicorns with a fierce and tender devotion. She dreams of wearing a ballet tutu and dancing in a troupe someday — a dream held close not just by Karina, but by her entire family, who fight every day for the research that could make that dream possible.
Her family holds out hope for a treatment and actively seeks research that would cure her. They are part of a growing global community of families who refuse to accept that their child's future is limited — and who believe that the science is close.
