What is SPG50?
SPG50, or Hereditary Spastic Paraplegia Type 50, is a rare neurodegenerative disease that mainly affects children. It causes stiffness and weakness in the legs, making walking and getting around a daily challenge. Beyond the physical symptoms, families face a journey filled with uncertainty, searching for answers and hope. This condition is caused by mutations in the AP4M1 gene, impacting essential functions in the body.
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Meet Ona
Ona is a little explorer full of life. Her contagious laughter lights up every corner, as if the world were a place designed only to be enjoyed. She never stands still: she is constantly on the move, discovering everything around her with an inspiring energy. She recently learned to crawl, and since then there is no space she doesn’t want to explore.
What fascinates us most about Ona is her innate curiosity. She observes with a gaze that seems to analyze every detail, as if each object or gesture is telling her a story. It’s amazing how, through her eyes, the world is full of possibilities and wonder.
Ona teaches us every day that there is no greater joy than discovering, learning and laughing while doing it.
