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…
The IncRETTibles
— Jacqueline Babiarz

I never thought about where I sat in the school’s gymnasium until my late daughter, Cammy, gained a wheelchair when she was 3. For most of my life, taking a seat was automatic — I’d climb to the top row of the bleachers, without hesitation, and settle in wherever the…

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…
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…
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…
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…
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…
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…
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…
On Oct. 29, Cammy, our 14-year-old daughter with Rett syndrome, went to bed with a cold. She was fatigued, had glassy eyes and mucus in her chest, and was coughing a little. We checked on her a few times during the night, but by 5 a.m., we knew…
A group of sloths is called a snuggle. A group of fish is a school. A group of birds is a flock. And a group of humans is a family or club. All of these individual animals are stronger together. My daughter Cammy’s high school mascot is…
Last weekend, my oldest daughter, 14-year-old Cammy, went to her first high school dance. Since she has Rett syndrome, Cammy’s everyday life has many more challenges than neurotypical children face. Among those challenges: getting ready for a dance. Fortunately, Cammy’s younger sister, 12-year-old Ryan, embraced all the…
When I think about high school, I immediately think about friends, sporting events, getting a driver’s license, and dances. As a parent, I’ve always wanted my children to have fun, safe, and positive experiences like I did. Now that my oldest, Cammy, is a freshman in high school, I…
Recent Posts
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- European regulators unlikely to recommend approval of Daybue
- My daughter and her wheelchair taught me lessons in accessibility
- Visual problems in Rett may be reversible, mouse study shows
- An eye-gaze device gave my late daughter a voice
- Pivotal trial tests new gene therapy approach for Rett syndrome
- Pivotal trial of Rett gene therapy TSHA-102 now underway, and recruiting
- FDA approves Daybue Stix, drug’s powdered formulation, for treating Rett
- My youngest daughter has now lived longer than her older sister did
- Severe epilepsy increases care needs for people with Rett