The Mighty Logo

A Message for the Rare Disorder Trying to Take My Little Brother's Life

The most helpful emails in health
Browse our free newsletters

D unnamed-4

ear Costello syndrome,

You’re a wild curse but also a blessing. Only about 200 people on the entire planet have you. Why did you take my brother, Brendan?

You’re the reason my family had a larger chance of winning the lottery than him surviving as a child.

You’re the reason he didn’t learn to walk until he was 7.

You’re the reason he was fed through a tube until he was 6.

You’re the reason my brother will never be able to grow as old as I will.

I hate you for this reason. You’re a selfish syndrome — you take away so many abilities that could make life for him so much easier, things even I take for granted. You’re the reason he has so many aches throughout his body every single day, and you’re the reason he’s undergone more than 10 surgeries just to even make life livable.

But oh, Costello syndrome, you’re so much more than just a disease that has captured my brother.

You’re the reason my brother has gotten the chance to meet his favorite football team, the Patriots.

You’re the reason I wake up with a smile every morning knowing I have the most kindhearted, gentle, loving, little boy to wave goodbye to when I leave for school.


You’re the reason I know beating the odds is completely possible when it seems like it’s not even within reach.


Even though there’s no cure, Brendan has beaten you. He will never let you fully absorb him, and he will never let you take away his humor or his smile. He will never let you take away his ability to see the world with only kind intentions or his love for any kind of food.


You’re part of the reason why I’m the person I am today — because of what you’ve done to my little brother. You will never fully take away the curly haired little boy who fights you every day of his life. You can never have him.

Madison Pawlina

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 12, 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