April 10, 2024 Perspective

Growing Up with a Sibling Who Has Rett Syndrome

Siblings of individuals with rare diseases, like Rett syndrome, play a critical, yet often overlooked role in their families, frequently putting aside their own aspirations to support their sibling.

At Acadia, we recognize and celebrate these unsung heroes through our Rett Sibling Scholarship program, aimed at empowering them to achieve their educational dreams. In this spirit, we share Chris Bartolotta’s story. Growing up alongside his sister Lisa, who has Rett syndrome, Chris reflects on the unique challenges and profound lessons learned from their shared journey.


My sister Lisa is one of the happiest people I know. She also has Rett syndrome.

Lisa is three years younger than me. Most people are surprised when they learn that she’s 35; individuals with Rett syndrome don’t always live that long. It’s always been just the two of us, so I don’t actually know what it’s like to grow up with a sibling who doesn’t have a disability.

Lisa’s symptoms are fairly severe; she’s never been able to speak. She does walk, and she needs help with just about everything else. It takes a lot of effort to care for her. I remember being a child the first time Lisa had a seizure and the paramedics had to come to our house. It is always incredibly difficult when she has an emotional outburst. It is hard on everyone, because she can’t express what she’s feeling.

Growing up, my parents had to be aware of what Lisa was doing 24/7. They did a really good job of making sure it didn’t affect me, but I still remember being hesitant to invite people over to our house because I didn’t know how to explain Lisa’s situation, or how they would react to it. My friends just didn’t get it. We had to make sure Lisa was having a good day just to go to a restaurant. Even on her good days people would stare. I remember being very self-conscious.

Despite the challenges of growing up as the sibling of an individual living with Rett syndrome, I credit Lisa with teaching me about the important things in life. Here are three life lessons I learned from Lisa:

Be grateful for what you have

My parents instilled in me at a very young age this sense that I could be anything and do anything, and it struck me growing up that Lisa wasn’t afforded the same privileges. I always wished she could have the opportunities that I had, and that left me with a profound sense of gratitude.

Make the most of every opportunity

In her own way, Lisa lives life to the fullest. She has TV shows that she watches and songs that she listens to over and over again. Some of my favorite memories are from my wedding. Seeing Lisa out there on the dance floor with everyone else was a reminder to me that life is full of opportunities so that we can make the most of them.

Family is the most important thing

I see how important Lisa is to my parents. They don’t focus on the fact that she can’t play sports or go to college, they focus on her happiness and wellbeing. She does things that make them laugh or make them angry. She adds a lot of value to their lives—and mine—just by being who she is. 

Lisa is the prism through which I see life’s blessings. It is my hope that countless others will be inspired by my sister to cherish the ordinary, to hold family close, and to see beauty everywhere.

Author

  • Chris Bartolotta

    Brother to Lisa, who has Rett syndrome