Living Rare, Smiling Always

Living with Mucopolysaccharidosis Type VI has shaped me in ways both visible and invisible. It has taught me lessons most people don’t face until much later in life—lessons unique to living with a rare disease. I’ve learned to celebrate small victories, to adapt when plans shift, and to pause long enough to notice joy in the present moment.

My days are not without frustration, fear, or fatigue. But they are also filled with laughter, connection, and a quiet strength that grows with each passing year. Life with a rare disease is a constant balancing act—between advocating fiercely and knowing when to rest, between accepting reality and still daring to dream beyond it.

Kendra at Gottsleben Grandparents' house during Christmas

When I was in my teens, someone once asked me, “Why do you smile so much? Don’t you think life sucks?” I remember being caught off guard. I hadn’t realized I smiled that often, nor that it might seem strange to someone else. My response was simple: “Yes, there have been some tough times. But I guess I don’t focus on them.”

The truth was, by then, I had already endured numerous medical scares and surgeries. Of course, there were moments I wished my biggest worry was a math test, rather than being wheeled into an operating room with tears in my eyes, leaving my parents behind. But wishing didn’t change my reality. And being angry at the world wasn’t going to make my life better. So I chose to hold onto the things that made me smile.

As I’ve grown older, I’ve come to realize that much of my advocacy work today is rooted in that younger version of me—the girl who didn’t always know what her future would look like, but still kept smiling. Sometimes I hear songs from my tween and teen years and remember sitting at school dances, watching my classmates dance with their boyfriends and girlfriends. The thought would cross my mind: Will that ever be me? Probably not. But that’s okay. You just live the best you can with what you’ve got.

Back then, authentic representation of people with disabilities and rare diseases was almost nonexistent in media, books, and culture. There wasn’t much to look at or strive toward. But even in that absence, I never stopped smiling. And today, I work to ensure that others see themselves represented—so they know their stories matter, too.