Welcome to Zayden's Journey with Myotonic Dystrophy Type 1

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.

Weekend With My GG

My GG came over for the weekend to help my Grammie  care for me this weekend. GG held me and played with me sitting in her favorite chair almost as soon as she got here last night. While GG and me played, Grammie gave me fresh bedding on my crib and  got laundry caught up.  Grammie made phone calls to some people who also have DM or are caregivers of others with DM. My mommy called and we did a video call, (mommy thinks I'm growing up too fast.) When Grammie put me to bed, I decided I didn't like sleeping in the position Grammie put me in, (on my right side,) so I turned over on my tummy. It's kind of my favorite nurse, Dawn's fault because she put me on my tummy when Grammie went to pick GG up and I liked it so much. GG stayed up all night watching me while Grammie got some sleep between her alarms set to make sure I get all my medications on time. (GG still isn't very comfortable with all my tubes so Grammie handles all that for me when its just us. My favorite nurse helps Grammie when she is here.) 

Read more »

Zayden has his front four teeth

The past few days, I’ve been feeling cranky, and no one could quite figure out why. I was teary-eyed all day, drooling endlessly, and needing constant suctioning. But leave it to Grammie to solve the mystery! HEHE. She gave me some instant mashed potatoes, and when I bit down on her finger—surprise! Two teeth on the top and two on the bottom popped in all at once. Yay for Grammie! 

Read more »

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.