Adult RTS Patient Lives Full, Joyful Life

Written by Melissa and Bill, Sophia's mom and dad

The three of us are very close and live in a small town where everyone knows and loves Sophia. We are a typical family with highs and lows, and much of what we do, we do together. Now that Sophia is an adult, we are trying to figure out how to give her independence while still supporting her to make good decisions.

Sophia keeps busy by swimming at the Y, going to the thrift store and participating in an adult workshop five days a week. She also attends Stepping Stones Young Adult Club and loves going to Chipotle and Starbucks.

A Tremendous Soul

Having a person in our family with RTS has allowed us to meet people we likely wouldn’t have met otherwise. And because Sophia is extremely outgoing, we have had the opportunity to talk and get to know others on a different level.

Sophia is hilarious and dramatic and loves to engage with people. Sometimes we struggle with her behavior, but if she can get beyond her anxiety, she is a truly funny and deeply empathetic person.

Although her communication barriers make it hard sometimes, Sophia is very deep. She is a tremendous soul who has to struggle through so much to be able to explain that side of her. I am constantly amazed by her resiliency, joy, and excitement for life and her surroundings.

From One Parent to Another

Our advice to families with a newly diagnosed child, is to go live your life. We had the pleasure of getting to know Dr. Rubinstein, and he once told us the same thing. While there is strength in connecting with others in the RTS community, the real beauty happens when you just start to live and stop letting RTS define your every moment.

And don’t be afraid to reach out to your family and friends to try and make them a part of your support network; it is important to your family's ongoing success!