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

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…

I was surrounded by love on my daughter’s first heavenly birthday

Since my daughter Cammy passed away in December due to complications of Rett syndrome, I’ve been experiencing a lot of firsts without her. The holidays hit hard. We had to navigate our first Christmas, New Year’s, Valentine’s Day, my husband Billy’s birthday, and our younger daughter Ryan’s…

Honoring the healthcare providers who became our second family

Our local hospital, Northwestern Medicine Central DuPage Hospital in Winfield, Illinois, offers patients and caregivers the opportunity to nominate a nurse for a Daisy Award. It’s a way to recognize the tremendous and extraordinary care a nurse has provided. I wish I knew the statistics about the number…

Help us celebrate our daughter’s first heavenly birthday

March 10, 2023, was the last time we would ever celebrate our late daughter Cammy‘s birthday with her. In my heart, I knew it would be, as complications of Rett syndrome were impacting her more and more. Cammy needed to be on supplementary oxygen at night, her profound…