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.
Featured Post

Hindsight illuminates the early signs that my daughter had Rett syndrome

In 2009, my husband and I were living in a third-floor condo in Chicago. My brother and his wife lived just 2 miles away. Within eight days of each other, we both welcomed beautiful baby girls into the world. It felt like a dream come true. Our daughters would grow…

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…

What does it mean to experience expected loss as a parent?

I’ve been in grief therapy ever since my oldest daughter, Cammy, passed away last December due to complications of Rett syndrome. When I filled out the intake forms, a question really struck me: It asked if my loved one died unexpectedly. I sat there staring at it…

Navigating parental bereavement on Mother’s Day without Cammy

I’ve had several titles in my life: sister, daughter, mother, wife, teacher, and coach, to name a few. But the latest one isn’t something I think I’ll ever get used to: bereaved parent. I learned that there is a Bereaved Mother’s Day every year on the first Sunday in…

Documenting and sharing my daughter’s life with Rett syndrome

I’ve always been a shutterbug, someone who loves to capture moments with a camera. When I had my firstborn, Cammy, and bought my first smartphone in the spring of 2009, documenting her was only natural. I began taking weekly and monthly photos of her to track her growth. When…

When a dodgeball tournament uplifts a family — and a community

Shortly after our daughter Cammy passed away on Dec. 13 due to complications of Rett syndrome, we were approached by Joe Kish, the assistant principal at Franklin Middle School, our youngest daughter Ryan’s school in Wheaton, Illinois. He asked about designating Cammy Can, the organization we created to…

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…