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

The most difficult conversation I have ever had

“How do you tell your child their sibling is going to die?” That is a question I never expected to Google. In early November 2023, our oldest daughter, Cammy, was on a BiPAP machine in the pediatric intensive care unit (PICU) when she stopped breathing. The medical team rushed…

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…

Venturing out into the world as a family of 3

Last fall, I purchased four tickets to see the hit musical “Hamilton” in Chicago in last December. My husband, Bill, and our youngest daughter, Ryan, had already seen the show in New York, but were happy to see it again with our oldest daughter, Cammy, and me. We…

In loving memory of our sweet angel, Cammy

For 14 years, we had known this day would come, but we couldn’t possibly have fully prepared for it. On Dec. 13, 2023, our beautiful daughter Cammy put her superhero cape on one last time. Cammy continued teaching us important lessons right to the very end, as she displayed…

After more than a month in the hospital, we’re expressing thanks

I never imagined we’d be in the hospital for a second consecutive holiday, but we were. Our oldest daughter, Cammy, was admitted to the pediatric intensive care unit the day before Halloween. Now we’ve spent Thanksgiving in the hospital, too. But despite being here for a month, we…