Every thread matters.

Welcome to Our Journey

My husband, Damon, and I have been married for more than 27 years, and together we are raising two amazing sons: Easton (16) and Lucas (12). In August 2026, our youngest son, Lucas, was diagnosed with early-onset facioscapulohumeral muscular dystrophy (FSHD), a rare genetic muscle disease that has changed the way we look at the future.
 
Like many moms, I responded immediatley. I prayed for healing, peace, and strength for the road ahead. Then I rallied the troops and entered full research mode, determined to understand this rare disease and find every resource possible for Lucas and our family.
 
While I found a great deal of information about adult FSHD, I quickly realized there was very little information available about children living with early-onset FSHD. I also discovered that much of the current research and many emerging therapies are focused primarily on adults, leaving pediatric families with limited information and even fewer answers.

That reality sparked a growing desire to connect with others walking a similar path.
As the questions continued to outnumber the answers, I felt called to create the resource I couldn't find. Through this blog, we hope to share our family's journey, raise awareness about early-onset FSHD, and offer encouragement to anyone navigating a diagnosis that feels overwhelming and uncertain. 

As we learn, advocate, and navigate this journey together, my hope is that no family facing early-onset FSHD will feel quite as alone as we once did.
 
If you've been following our journey with Lucas, you know that living with early-onset FSHD means our weeks don't always look like everyone else's. Some days are filled with laughter, victories, and milestones worth celebrating. Other days are marked by uncertainty, disappointment, and challenges that feel overwhelming. Through it all, however, we know our hope is found in Jesus Christ, and we trust the Author who is writing Lucas's story.
 
Lucas and I decided we don't want to share only a carefully curated highlight reel. We want to document the whole journey: the good, the hard, and the beautiful. We want to create a place where family and friends can follow along, where others affected by FSHD can find encouragement, and where we can look back and see God's faithfulness through every season.
 
Every appointment, every challenge, every victory, and every moment in between is a thread in a much bigger story. This blog is our way of sharing those threads as they unfold.
 
Thank you for joining us on this journey.
 
With love,
Jennifer