It is with the heaviest of hearts that I write these words, addressing a reality that is becoming heartbreakingly common. Congenital Myotonic Dystrophy is no longer just a disorder—it has become a thief of dreams, a destroyer of hope, and, most devastatingly, a taker of precious lives. On Wednesday, December 10, 2025, this cruel and unyielding disease claimed our beloved Zayden Supplee without warning or reason. Just moments before, Zayden had been his playful, spirited self—sticking out his tiny tongue and pulling his favorite blanket over his head to avoid getting ready for the day. In the blink of an eye, everything changed. A piercing scream shattered the air, and then his fragile body gave out. Over an hour of desperate efforts couldn’t bring him back. We were faced with the unimaginable decision to let him go, as his tiny, beautiful heart could no longer fight.
Our hearts are broken beyond measure. The loss of our sweet Zayden has left a void we cannot begin to describe. The pain is unbearable, but I find a small shred of solace in the belief that he is now with his great-grandfather, Jay, and the cousin who shares the same date of passing. In my mind, I see them welcoming him with open arms and warm smiles at the gates of heaven. I imagine them together, full of joy, running after playful puppies and laughing as the puppies spin in circles trying to catch their tails. Though this vision offers a glimmer of comfort, it doesn’t ease the unrelenting ache or stop the endless flow of tears. The thought of Zayden in such a happy place gives me a small measure of peace, even as the weight of his absence feels unbearable.
Zayden’s short yet impactful life touched countless hearts, and his passing has left an even wider ripple of grief. Our caregiving team—Dawn, Amelia, Jenn, and Steven—became part of our family through this journey. Their love, compassion, and unwavering strength were gifts we can never fully repay. These individuals faced every challenge with us, from the family squabbles to the struggles of acquiring medical supplies, equipment, and services. They stood by our side during hospital visits, nursing agency negotiations, pharmacy battles, and so much more. To anyone who says, "They were just his nurses, they’ll move on to new patients," let me be clear: they were never just nurses.
DAWN, AMELIA, JENN, AND STEVEN BECAME OUR FAMILY. Together, we’ve lost a vibrant, extraordinary little boy who held us all together. Zayden was the light that connected us, and without him, it feels as though a piece of our family has been torn apart. Our bond remains, but the emptiness he leaves behind is immeasurable.
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