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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My youngest daughter has now lived longer than her older sister did

Dec. 13 marks two years since my oldest daughter, Cammy, passed away from complications of Rett syndrome. She was 14 years, 9 months, and 3 days old. I hold on to that number because it matters. It’s not just a measure of time; it’s a line in our family’s…

A Rett syndrome clinical trial was our way of paying it forward

While raising a child with profound special needs, I felt like we didn’t have control over much. Rett syndrome grabbed ahold of our late daughter Cammy, and there wasn’t much we could do about it. The only things we felt we could control were raising awareness, fundraising, and assisting…

How Rett syndrome affected my children’s birth order traits

I’ve always been fascinated by birth order theory, which suggests that the order in which children are born may influence their personality traits and relationship roles. As the youngest of six kids, I loved being the baby of the family. While my siblings would say I was spoiled,…

I lost 40 pounds — twice

My oldest daughter Cammy weighed 40 pounds at her heaviest. Having a 40-pound 5-year-old would be fine, but Cammy was 14 when she weighed that. Her 4-foot-tall, 40-pound frame was at “failure to thrive” for most of her life. Cammy’s weight was always a catch-22 for us. It’s scary and…

A pink homecoming dress keeps sisters connected

Grief is complicated. There’s no playbook, but I wish there were. I try to prepare myself for events that I know will evoke grief, but I can’t stop it from bubbling up. My oldest daughter, Cammy, passed away in December 2023 at the age of 14 from complications of…

In events of mass violence, who protects people with disabilities?

Most people from my parents’ generation remember where they were when President John F. Kennedy was assassinated in 1963. Sept. 11, 2001, was my generation’s “Where were you when …?” I was driving to an 8 a.m. class when I heard on the radio that a plane had crashed into…

Crisis prevention training reminded me of my late daughter

Last week, I attended a Crisis Prevention Institute (CPI) training session at the school where I work, and I couldn’t stop thinking about my late daughter, Cammy. Listening to examples of students’ trauma and precipitating factors that staff and fellow classmates might not be aware of reminded me of my…

Preparing our youngest for high school is not what we’d hoped

I’m the youngest of six children: four girls, a boy, then another girl. (That last would be me.) I was always jealous that my sisters were able to be together while attending the same high school and college. Hearing their memories of carpooling, hanging out, being teammates, and preparing…

The part I never got used to while raising a child with Rett syndrome

Having a child with Rett syndrome who can’t communicate their needs, desires, and emotions as easily as a neurotypical person does is sad, frustrating, and complex. There were many times when we asked our late daughter, Cammy, a series of yes-or-no questions to figure out what was going on…

Waking up in the middle of the night to care for our late daughter

Caring for our late daughter, Cammy, often made my husband and me feel like we were sleepwalking through the night. Cammy had profound special needs due to Rett syndrome, requiring us to get up in the middle of the night. Our baseline became so skewed over the years; it’s…

Why our daughter’s 8th-grade promotion is extra meaningful

When I was growing up, my parents never made a big deal out of graduations. In fact, my brother was at the beginning of the alphabet, so he walked across the stage in high school, received his diploma, and promptly exited through a side door, where we all met him.

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