MIKEY'S JOURNEY

My journey has been shaped by a lifetime of medical challenges that have tested my resilience and defined my purpose. It all began in infancy when I started experiencing seizures. Misdiagnosed as migraines for years, these episodes persisted into adulthood, leaving me with more questions than answers.

At 10, I faced my first major medical hurdle—a common bone tumor that required surgical removal. Thankfully, the surgery was successful, but it marked only the beginning of my complex health journey. At 12, I was diagnosed with kyphoscoliosis, a spinal condition that added to the growing puzzle of my health. Despite countless doctor visits and tests over the years, no one could connect the dots.

In 2022, everything changed when I began experiencing neurological symptoms that were impossible to ignore. It was clear something was very wrong. After years of searching for answers, I finally found myself in a geneticist’s office. In 2023, I was diagnosed with an ultra-rare genetic mutation—a condition so uncommon that even specialists had limited information about it.

The isolation and uncertainty of this journey could have broken me, but instead, it ignited a fire within me. I decided to share my story online to let others know they are not alone. Living with a rare disease can feel like an uphill battle, but by documenting my experiences in real time, I’ve connected with a community of fighters and advocates who inspire me every day.

Today, I strive to be a voice for disabled adults, using my platform to raise awareness, spread visibility, and challenge stereotypes. Through my work as an entertainer, public speaker, model, music producer, and online personality, I aim to show the world that disability is not a limitation—it’s a part of our strength and individuality. Together, we can amplify the voices of the disabled and rare disease communities, creating a world where everyone feels seen, heard, and valued.