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…

An adaptive bike gave my late daughter a sense of normalcy

When my late daughter, Cammy, was diagnosed with Rett syndrome at 20 months old in 2011, we grieved the loss of our perfect child. After learning about Rett and everything it can rob a child of, we worried Cammy would never have the opportunity to enjoy many typical childhood…

Flying with Cammy, our superhero, on her 16th birthday

I think most children in the U.S. look forward to getting their driver’s license on their 16th birthday. I know I did. But when our oldest daughter, Cammy, was diagnosed with Rett syndrome at 20 months old, our dreams for her to have typical experiences like that vanished. Knowing…

How balloons helped me fight seasonal depression and grief

Winters in Illinois, where I live, always feel so long. I’ve felt seasonal depression around this time for several years now. I suspect that the absence of sunshine and warmth affects my mood, energy, and anxiety. When this seasonal depression is added to the grief I feel over…

The coldest day brought the warmest of smiles

As an adapted physical education teacher, I travel to multiple schools. This year, I’m visiting five schools, with students ranging from preschoolers to eighth graders. I’ve been slowly sharing with colleagues, when it feels right, the story of my oldest daughter, Cammy, who passed away just over a year…

The Coldplay song that resonated before my daughter’s diagnosis

Winter break always brings me back to December 2010, when all I could think was, “This will be our last Christmas and New Year’s without an official diagnosis for Cammy.” We’d spent several long months going to appointments and therapies, trying to figure out why our 20-month-old daughter, who…

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…