Jackie Babiarz,  Rett Syndrome Columnist—

When Jackie Babiarz’s daughter, Cammy, was diagnosed with Rett syndrome at age 2 in 2011, Jackie became a point person for newly diagnosed Rett syndrome families across the country by providing guidance for marketing and fundraising, and by advocating for families with IEP meetings and transitions. Jackie also created a social media page with over 12,000 followers. She speaks to classes and schools about special needs, inclusion, and anti-bullying. Jackie is dedicated to helping families and strengthening communities. She and her family reside in Wheaton, Illinois. "The IncRETTibles" is her family's journey with Rett syndrome.

Articles by Jackie Babiarz

Life lessons from ‘Sesame Street’ and my late daughter, Cammy

My late daughter, Cammy, loved “Sesame Street” because it was the world she imagined for all of us. Kindness, patience, unconditional love, empathy, hope, and acceptance are just a few of the core values our family learned from the show, but we actually lived them with Cammy. Our daughter’s…

What my family and I learned from my late daughter

In her short 14 years on earth with us, my daughter Cammy taught my family and many others more about life than we could’ve ever taught her. She was more than a little girl who had Rett syndrome. She brought out the best version of everyone she…

The coping tools that are helping as I grieve my daughter’s passing

Self-preservation. Boundaries. Circles. Comfort zones. These are practices I’ve learned during grief therapy. I’ve been implementing these coping tools since my oldest daughter, Cammy, passed away from complications of Rett syndrome last December. She was 14. After Cammy died, many friends and family encouraged self-preservation. They…