The IncRETTibles – a Column by Jacqueline Babiarz

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…

While raising my 13-year-old daughter, Cammy, who has special needs, I eventually stopped caring about test scores, regardless of whether they probed educational levels or motor skills. This has helped me to focus on her as a person as well as on her progress. This strategy has been the…

My dad, Joe Corrado, was my real-life Superman when I was young. He was larger than life, the smartest and strongest man I knew. He always shared wrestling stories from his years at Lane Tech College Prep High School in Chicago. He even kept a piece of cartilage in a…

When my oldest child, Cammy, was born on March 10, 2009, I imagined her at certain ages. I pictured her at 4 riding a two-wheeler for the first time. The 10-year-old version would have a sleepover with her friends on her golden birthday. The 13-year-old would start to talk…

In April, we will attend our fifth International Rett Syndrome Foundation (IRSF) conference since 2011, when our daughter Cammy was diagnosed with Rett syndrome at 20 months old. We have attended each conference with open hearts and minds. We have specific goals each year, but our overall agenda has…

As a parent, I consider myself well informed about the school system. I was a high school teacher before I had kids, my oldest sister is an early childhood educator, and my middle sister is a school physical therapist. Both of my sisters have been instrumental in helping me to…

When my 12-year-old daughter Cammy was diagnosed with Rett syndrome at 20 months old, we were told it’s a rare neurological disorder that primarily affects girls because it’s caused by a gene mutation in the X chromosome. The condition is estimated to affect one in 10,000 girls worldwide.