The IncRETTibles – a Column by Jacqueline Babiarz

Everyone remembers their first concert — who came along, where it was at, and most importantly, who performed. I went to my first concert in the 1980s, when I was in second grade. My mom took my five siblings and me to see Michael Jackson at a local venue…

Our family hosts an annual fundraiser on behalf of our 13-year-old daughter, Cammy, who has Rett syndrome. This year’s event was held this past Saturday, and all proceeds are going to the International Rett Syndrome Foundation to help fund research into potential treatments or even a cure.

Some of my pet peeves in the typical world in which I live are people who incorrectly use the word “literally,” or refuse to wait for others to exit an elevator before entering, or try to get off an airplane before it even arrives at the gate. There are also…

It’s no wonder that Cammy, my 13-year-old daughter with Rett syndrome, is a superhero. She comes from a long line of strong women. The superpower of Kim, my oldest sister, stems from her love of learning. She is the most incredible early childhood teacher I’ve ever known. Her…

Our nearest and dearest friends, George and Lisa Karavas, have been with us through every step, twist and turn, and up and down of this journey with our 13-year-old daughter, Cammy, who has Rett syndrome. It is hard to accurately and eloquently put into words how much their family…

When I was in middle school, I had sleepovers with my friends every weekend. My 11-year-old neurotypical daughter, Ryan, has had sleepovers with her cousins since she was a toddler, and now she has them with her friends. But my 13-year-old daughter, Cammy, who has Rett syndrome, has…

Some days my 13-year-old daughter, Cammy, has what I call a “Rett day.” I can’t think of another way to phrase it. Rett syndrome has taken Cammy’s ability to speak. She can’t use her voice to talk to my husband and me or let us know what makes her…

When assessing for developmental delays, doctors and therapists will check a toddler’s protective responses, such as instinctively outstretching the arms to prevent or brace for a fall. I can only imagine the terror of feeling unsteady and knowing there is absolutely nothing to do about a fall. While my 13-year-old…

Everywhere we go, my 13-year-old daughter, Cammy, leaves an imprint. People gravitate to her. They want to help her participate like everyone else, in whatever capacity they’re able. I find this often while we vacation. When people greet Cammy or ask her a question, we are quick to educate…

Picture day at school always gives me anxiety for my daughter Cammy, 13, who has special needs. Rett syndrome has robbed her of the everyday abilities we take for granted, including walking, talking, using our hands purposefully, sitting up straight, and smiling on command. I can dress…