On Nov. 23, 2010, when my firstborn, Cammy, was 20 months old, a physiatrist clinically diagnosed her with Rett syndrome. I was relieved that someone had finally identified her condition, but equally devastated by what it meant. I’m not sure if the doctor didn’t know how to convey the…
The IncRETTibles – a Column by Jacqueline Babiarz
My husband, Billy, met his best friend, Aaron, while playing golf at high school. Aaron began dating his wife, Joy, when they were in college. Billy became their third wheel until I came along a few years later. In our 20s, all four of us spent every weekend together while…
I vividly remember reading an article about the late Boston Marathon icon Dick Hoyt. It was 2005, and I was dating my now husband, Billy, the father of our two beautiful girls, Cammy and Ryan. I sent him the article, knowing he’d love it, too, as he was…
As my two girls finished up fifth and seventh grade, I completed my coursework in special education. My firstborn, Cammy, who has Rett syndrome, inspired me to go back to school so I could better serve other children with special needs. Now with my master’s degree plus a…
Everyone remembers their first concert — who came along, where it was at, and most importantly, who performed. I went to my first concert in the 1980s, when I was in second grade. My mom took my five siblings and me to see Michael Jackson at a local venue…
Our family hosts an annual fundraiser on behalf of our 13-year-old daughter, Cammy, who has Rett syndrome. This year’s event was held this past Saturday, and all proceeds are going to the International Rett Syndrome Foundation to help fund research into potential treatments or even a cure.
Some of my pet peeves in the typical world in which I live are people who incorrectly use the word “literally,” or refuse to wait for others to exit an elevator before entering, or try to get off an airplane before it even arrives at the gate. There are also…
It’s no wonder that Cammy, my 13-year-old daughter with Rett syndrome, is a superhero. She comes from a long line of strong women. The superpower of Kim, my oldest sister, stems from her love of learning. She is the most incredible early childhood teacher I’ve ever known. Her…
Our nearest and dearest friends, George and Lisa Karavas, have been with us through every step, twist and turn, and up and down of this journey with our 13-year-old daughter, Cammy, who has Rett syndrome. It is hard to accurately and eloquently put into words how much their family…
When I was in middle school, I had sleepovers with my friends every weekend. My 11-year-old neurotypical daughter, Ryan, has had sleepovers with her cousins since she was a toddler, and now she has them with her friends. But my 13-year-old daughter, Cammy, who has Rett syndrome, has…
Recent Posts
- 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
- Gene therapy NGN-401 leads to functional gains in Rett syndrome
- New study links Rett energy problems to specific gene mutations
- A Rett syndrome clinical trial was our way of paying it forward
- Partners to design AI-based gene editing therapies for Rett
- Rett gene therapy trial starts dosing patients
- Iron-fueled death of cells may drive Rett syndrome damage: Study
- How Rett syndrome affected my children’s birth order traits