3/15/2024: This is the first post I’ve written in a while. If you’re a new reader, The Foundation for Casey’s Cure was started in 2019 to find a cure for a rare form of muscular dystrophy my daughter, Casey, has inheritied from her dad. It’s an ugly disease. An ugly, ugly, disease with a life-shortening end. And her family members, even her new grandson, may have inherited it. A life-shortening ugly disease. Imagine living with that… it’s why, as her mom, I started the Foundation for Casey’s Cure.
Today started with a bit of a challenge for me. It was just after lunch when I thought to sit down to write And now it’s almost 5 PM as I finally begin. I was trying to get onto my website hosting service—a task that should’ve been simple. But, things didn’t go smoothly, and it left me feeling quite frustrated. This experience was a reminder of how tough it can be to manage a patient advocacy group. My tiredness isn’t physical exhausting; dealing with these hurdles is mentally draining for sure. Like all of us, I have a lot on my plate, and the fear of missing something critical can be overwhelming.
But as I brought my laptop to the living room (for some much needed scenery change from my desk…) and I typed the heading into this post, it occurred to me that my days pale in comparison to my daughter’s.
A nurse with an ugly disease
Casey knew.
Casey’s dream of becoming a nurse was ignited in middle school, a desire that burned brightly as she stood by her father during his battle with muscular dystrophy. Her devotion to his care forged her resolve to pursue a career where she could extend that compassion to others. The pride that swelled in her heart upon graduating from nursing school was immeasurable—a milestone that celebrated her journey and echoed her deep-seated passion for healing and hope. Dive into Casey’s inspiring story by watching this heartfelt video: https://youtu.be/Rm_sg1-ECKw?si=XJ8j5vXr0GfDG2Ys. Set aside 5 minutes and be moved by her unwavering spirit.
But I deviate from the point.
HER days are long and hard because of an ugly disease
Every morning, she gets up with effort, gets into her car, and drives to her job. She works as a nurse and gives excellent care to her patients who have lung problems. These patients can be tough to take care of sometimes. She often has to do the work of two people because there are not enough staff or some are sick.
Other nurses really understand how hard these days can be. But, like many, her day doesn’t end there; she’s also a wife, mom, and grandma, too, just like so many of us. She comes home every night very tired, but this shows how much she cares and loves those things that make up her life.
Tired?
I want you to realize that the tiredness we feel at the end of the day is nothing compared to hers. She has to use a lot of effort to stand up, and her muscles hurt when she does. Continually trying, even as her legs get weaker. She smiles through it all, even though she knows that her muscles are getting worse because of her illness, and that both she and doctors feel helpless as it continues to get worse.
That’s all for today. Next week, we have a meeting with the scientists to catch up on their recent research. After that, we’ll pay them $12,378 for another month of their work. Medical research costs a lot, but every donation helps. If you’re able to, please consider donating at www.caseys-cure.org.
Love to you all,
Chris Duane, Casey’s mom…💕
