The IncRETTibles
— Jacqueline Babiarz

IncRETTibles

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.
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The importance of raising awareness of disabilities at school

My late daughter, Cammy, was diagnosed with Rett syndrome at just 20 months old in 2011. From that moment on, advocacy became part of our everyday life. Cammy’s journey taught our family not only about the challenges that people with disabilities face, but also about the importance of compassion,…

The last 24 hours with my oldest daughter, who had Rett syndrome

On Dec. 13, it’ll be one year since our oldest daughter, Cammy, passed away from complications of Rett syndrome. In some ways, I can’t believe it’s been a full year; in other ways, it’s seemed like the longest year of my life. Over the past week, I’ve cried myself…

Our daughter’s wings helped runners fly across the finish line

When our oldest child, Cammy, was diagnosed with Rett syndrome in 2011, family, friends, and strangers rallied around us. Some of our closest friends have found special ways to bring Rett syndrome awareness and Cammy’s journey into their own lives. The Wintermute family, for example, has always kept Cammy…

Finding my ‘web of support’ during the most difficult days

October is a triggering month for me. Grief punches me in the gut every day. In October of last year, my oldest daughter, Cammy, went from having a fairy-tale homecoming at school to being hospitalized in the pediatric intensive care unit (PICU) for six weeks. She passed away…

Our daughter’s Make-A-Wish trip was a dream come true

Second in a series. Read part one. Cammy Babiarz took her first ride in a limo during her Make-A-Wish trip in November 2018. (Photo by Jackie Babiarz) Make-A-Wish is an extraordinary organization that grants wishes to children with critical illnesses. In my last column, I shared that…

Finding the right time to begin the Make-A-Wish process

First in a series. My late daughter, Cammy, was diagnosed with Rett syndrome in 2011, when she was just shy of 2 years old. A year later, someone brought up the idea of referring her to Make-A-Wish, an organization that grants wishes to children with critical illnesses.

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…

A benefit concert to celebrate the memory of Cammy Babiarz

After seven months, we finally have a memorial set for my daughter. Cammy passed away last December, at the age of 14, due to complications of Rett syndrome. It took that long to figure out an appropriate venue with the capacity we think we’ll need for folks…

The decisions (some instant, some later) to do right by our daughter

As a parent, some time-sensitive decisions and actions need to be made when your child passes away. Before the death of my daughter, who had Rett syndrome, I knew that certain details needed to happen immediately. Nevertheless, I cannot imagine anyone is ready to deal with them when…

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…

Traveling to New York without worrying about accessibility issues

Not having to make every decision around accessibility and special needs is definitely taking time to get used to. It has been six months since my oldest daughter, Cammy, passed away due to complications of Rett syndrome, and my mind still goes directly to figuring out how to…