Zayden's Legacy is Emerging

Meet my remarkable 18-month-old grandson, Zayden. Born June 10, 2024, Zayden showed incredible bravery from birth, facing Congenital Myotonic Dystrophy Type 1, a rare condition affecting 1 in 8,000 infants. Though he passed on December 10, 2025, his legacy continues to inspire us deeply.

I am honored to share Zayden’s story and invite you to support his legacy through Zayden's Crusade Foundation Inc.

To ensure Zayden received the best care, we moved from West Virginia to Florida, where he was treated at Johns Hopkins All Children’s Hospital, a leading facility for his condition.

After six tough months in two NICUs, Zayden came home, but challenges persisted. Finding in-home nursing care was difficult, and I left my career to care for him full-time, impacting our family’s income. Managing medical supplies, medications, and navigating the healthcare system was logistically and emotionally overwhelming.

Despite all, Zayden’s resilience amazed us. He consistently exceeded medical expectations, inspiring everyone around him with his strength and hope. The support from family, friends, and even strangers carried us through tough times.

Florida’s systemic challenges added to our struggles, as the state ranks 49th nationally for special needs support. Accessing essential resources was often exhausting and discouraging, compounding the difficulties we faced.

Your support can make a lasting impact. Whether through donations or spreading Zayden’s story, you help raise awareness for the Foundation's mission: supporting special needs families and advocating for better resources, policies, and care.

Sharing Zayden’s story is invaluable. Every mention and act of awareness brings us closer to creating meaningful change for families in need.

While our fundraiser hasn't gained widespread attention, we are deeply grateful for every donation, message, and kind gesture. Your compassion fuels our hope and reinforces our mission to honor Zayden’s legacy. Thank you for your support.