Otto's Story...

Otto was born on December 27, 2002, in Barquisimeto, Venezuela, right in the middle of a national crisis. The streets were tense, gas was scarce, but when he came into this world, it felt like light had broken through the darkness. He was perfect, healthy, strong, and so loved.

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When Otto was eight months old, our lives changed forever. After a routine vaccine, he developed a fever and soon experienced his first seizure. That seizure marked the beginning of a long and difficult journey, eventually leading to his diagnosis of Dravet Syndrome, a rare, catastrophic form of epilepsy.

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For a long time, we were often told that everything was fine, that Otto would grow out of it or that his symptoms were not serious. But as the seizures continued, it became clear that his situation was much more serious than anyone had expected. His life has since been defined by countless hospital visits, many nights in emergency rooms, and numerous medical tests and surgeries. Each seizure not only poses a physical danger but also slows his development, taking away milestones most children reach easily.

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Mentally and developmentally, Dravet Syndrome has been very challenging for Otto. He struggles with speech, communication, and cognitive development. Learning new skills often takes time and effort, as seizures repeatedly affect the progress he works so hard to make. Emotionally, the constant medical treatment and physical limitations are exhausting for him and for everyone who loves him.

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Otto’s life is not easy, but it is full of love, strength, and resilience. Sharing his story is my way of honoring him and bringing more awareness to a condition that desperately needs understanding and research. Even with all of these challenges, Otto’s spirit remains strong. Despite the hospital stays and painful recoveries, he carries a light and resilience that inspire everyone around him. He teaches daily lessons about strength, patience, and unconditional love.