Caregiver Stories

Carlos Gives Voice to Myasthenia’s Fight

Three years ago, when my father was diagnosed with Myasthenia Gravis, I never imagined the path that lay ahead. I stepped into the role of both advocate and caregiver with a singular goal—to ensure that he received the best care, support, and treatment possible.

I was warned that the first year would be the hardest, a time of unpredictable challenges and heart-wrenching uncertainty, and indeed it was.

As the months passed and treatments struggled to keep pace with the progression of his condition, I found myself desperately seeking answers and a sense of community. It was during these long, often difficult days that I discovered the Myasthenia Gravis Foundation of America.

Connecting with others who had weathered similar storms not only gave me solace but also kindled a deep passion for advocacy. I soon realized that my journey was bigger than just caring for my father—it was about making a tangible difference in the lives of everyone touched by this disorder.

In time, my efforts blossomed in unexpected ways. I now have the honor of serving as the co-chair for the Myasthenia Gravis Walk here in New York this September, and I was humbled to receive the Emerging Leader Award. These achievements, though unplanned, are a testament to the strength of our community and to the profound impact that compassionate advocacy can have.

Every day, I stand by my father’s side, especially during moments when words fail him. With his limited English and the setbacks that have taken away his ability to speak clearly, I have learned to listen to the language of his eyes, his gentle gestures, and even the high-pitched sounds that he now makes—each a reminder that he is still here, still fighting.

I speak for him when his voice falters, ensuring that his story is heard and that his struggles are not in vain.

Through every obstacle, I have strived to make sure that my dad knows he is never alone. By raising awareness and opening hearts, those around him have come to understand the daily battles he faces. And in that understanding, he finds comfort. I remain steadfast in my commitment, not only to his care but to the broader MG community, always determined to advocate, to listen, and to lead with love.

This journey has been as much about my own growth as it has been about caring for my father. Every step, every victory, and even every setback has deepened my resolve to be a voice for those who cannot speak for themselves, proving that even in the face of uncertainty, hope and compassion can light the way.

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