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Jay C. "Jazzy J" Theriot

Jay C. "Jazzy J" Theriot

Thriving with an unknown ultra-rare genetic slow-progressive neuro-muscle disorder

Sikorsky UH-60 Black Hawk & Bombardier CRJ-700

Posted on January 31, 2025 By Jazzy J

As I sit at my desk, I grieve for those lost in the tragic accident knowing I must go on. I’m blessed. I have a hot cup of cafe’ au lait with chicory. I may have had to wheel myself around the house to create it. But I am still blessed to be alive.

In this life I have found placing blame does little good. It detracts us from making a better tomorrow.

I’m 56, turning 57 in September. I have a 1:1,000,000 genetic disease called voltage gated sodium channelopathy. It affects every muscle in my body and several different systems. So far, it has caused issues in my spinal column and left eye. My ability to urinate like a normal human is gone. My hands don’t always work and I have trouble moving air. Some days I can walk, others I crawl. But, I am alive.

As strange as it may sound, I love myself. It has taken many years for me to be able to say that before genetics kicked in. Then, I had to accept myself again.

We lost 67 lives in the crash. Let’s not lose ourselves.

Thanks for reading,
Jazzy J

Acceptance, Life, Understanding

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