The Mighty Logo

Dear Unknown Disorder That's Captured My Sister

The most helpful emails in health
Browse our free newsletters

Dear unknown disorder that’s captured my sister,

Ever since Kacey was young, doctors and researchers have been trying to find out what to call you. Honestly, a name doesn’t make a difference. You’re rotten either way. Kacey wakes up every morning, and you’re there until she goes to bed. You don’t know what I would do to give you a big ole punch in the face.

image1 (4)

Kacey’s whole life has to be accommodated for you. You make her incapable of walking, talking and doing a lot of other things. She’s unable to dance, sing or even tell me what’s in her head because of you. But don’t think you have her wrapped because she’s the most amazing person to ever live on this earth. Her strength shines through to anyone who meets her. The bravery she faces each and every single day is extraordinary. You may have taken her ability to walk, but I will push her wherever she needs to go, I will pick her up in my arms and dance. I will do anything to make her normal.

I hate you. I hate you for burying her voice deep down inside her. Her one hope is to find that voice. She has a tattoo on the inside of her arm that says “hope,” for that reason. You can keep nagging, but she will never stop being strong. And I will never stop loving her. I can feel your darkness there when she winces in back pain or when she starts choking because her first bite of food didn’t go down. I want to scream. I want to cry. But you wanna know something? I will never give up. I will never let you win. Neither will Kacey.


Yes, you may have taken away the ability for her to walk and talk and made her undergo brain surgery and multiple other surgeries — but you will not take away my best friend. I will never stop fighting you. I will continue to stand by her side and be her best friend. We will continue to laugh together, cry together and grow up together, and you will not take that away from us. She will continue to kick your ass and go on roller coasters, ride motor cycles, drink butter beer and be a normal 18-year-old.

I’ve thought a lot about you lately, and life would be so much better without you. Kacey is having such a hard time right now, and I can’t stand it. She’s eating only through her G-tube and cannot even go the bathroom on her own. I’ve seen you take so much from her in two weeks, and you need to stop now. I will not let you go on. And neither will her mother and father. We will battle you until you give up. You can’t have our Kacey.

You can try as much as you want, but you won’t succeed.

I will be her voice and feet. I will hold her hand through everything because she is my sister, and I love her. We will defeat you. Just watch.



For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Originally published: March 10, 2015
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home