It’s Wednesday. The middle of the week. For some, it’s just another day—but for our family, it’s therapy day!

Since Marley was three years old, one day a week has been dedicated to outside therapies. For the past eight years, I’ve had the privilege of taking her to appointments that help her grow, strengthen, and navigate this world. Some days are great. Some days are tough. But we keep showing up.

Today, as I look outside at the flurries falling over Dallas and feel the bitter cold (yep, it feels like 2 degrees), I won’t lie—I’m dreading stepping out into it. But therapy doesn’t stop for the weather, and neither do we. Over the last 416-ish weeks, I’ve mastered the art of working from the car, advocating for my daughter, and figuring it all out on four wheels. Marley gives it her all in her sessions while I juggle emails and Zoom calls in the parking lot, making sure we keep moving forward together.

Jonathan, my rock, knows Wednesdays are my hardest days. By the time we get home, I’m physically and mentally drained. But no matter how exhausting the day is, I will never stop. Because Marley never stops showing up for herself.

It’s been two years now since we received her #NARS1 diagnosis. Twenty-four months of learning, adjusting, connecting with other families on the same path, and accepting the reality that she won’t just “outgrow” this. That realization hurts. But it also fuels our fight. And we are so grateful for the incredible team surrounding Marley—her therapists, our sweet Rory Belle Foundation fighters, and the brilliant minds at @nloremfoundation working on a miracle just for her.

If you’ve ever wondered what this journey looks like, here’s a glimpse into a therapy day for Marley: Watch our recap video here.

We hope this video gives you a window into just how much effort Marley pours into these sessions—and just how much our family is willing to go to the ends of the earth to invest in her future. 

Fighting a rare disease isn’t just about medical breakthroughs. It’s about showing up every single day, no matter the conditions, no matter the obstacles. And while we fight this battle, we know everyone is facing something. If your faith is low, if you’re exhausted from the weight of your own struggles, if you need to know someone has your back—please drop a comment. Our family would be honored to pray over you. 🙏🏼

Thank you for being a part of Marley’s story. Your support, prayers, and love mean the world to us. If you’d like to help us in this fight for treatment, please consider donating to Marley's fundraiser. Every single dollar gets us one step closer.

With love and gratitude, 
Kayla