Welcome to Zayden's Journey with Myotonic Dystrophy Type 1

It is with deep sadness that I share this update: on December 10, 2025, Zayden bravely lost his battle with Congenital Myotonic Dystrophy Type 1. Despite his young age, he showed an extraordinary amount of courage, strength, and determination that continues to inspire us all. Zayden was a true warrior, achieving so much in his short but impactful life. He touched countless hearts, and we hope his story will continue to inspire and make a difference. Before his passing, we had begun planning a foundation in his honor — a mission we are committed to pursuing to carry on his legacy. 

Join us on our family’s heartfelt journey as we navigate the challenges and celebrate the triumphs of living with Congenital Myotonic Dystrophy Type 1, through Zayden's inspiring story. Together, let's raise awareness, foster understanding, and advocate for the vital changes needed to improve the lives of those impacted by this rare genetic disorder—affecting 1 in every 8,000 births—and their families who face its life-changing effects every day.

Forming Zayden's Crusade Foundation

13 Dec 2025 06:22

Zayden's Crusade Foundation is a non-profit organization dedicated to supporting families affected by Myotonic Dystrophy, particularly those who struggle to access the resources they need. Our mission is to streamline access to critical services and programs throughout Florida. By developing a comprehensive catalog, we aim to clearly outline what resources are available, along with their requirements and restrictions. This will save families time and frustration, helping them avoid the endless cycle of being referred from one agency or charity to another without finding meaningful solutions. Additionally, we strive to foster partnerships between local businesses and existing programs to address significant gaps in available support.

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About us

Welcome to our blog, where we share Zayden's personal journey with Myotonic Dystrophy Type 1. Our goal is to provide meaningful insights, resources, and support for individuals and families navigating life with this rare genetic disorder, which affects approximately 1 in 8,000 births. Together, we aim to foster a compassionate community, raise awareness, and advocate for increased research and understanding.