The IncRETTibles
— Jacqueline Babiarz

Do you ever wish kids came with a manual? Well, mine does. The International Rett Syndrome Foundation (IRSF) provides many wonderful tips and hacks for parents to navigate their way through this world of Rett syndrome. For school settings, some parents of children with Rett syndrome provide their child’s…

Three months after my daughter Cammy was diagnosed with Rett syndrome at age 2, we had the unique opportunity to participate in the International Rett Syndrome Foundation’s Natural History Study (NHS), the most comprehensive study of Rett in the world. The 15-year study collected data on more…

When I was young, back-to-school shopping motivated me to get excited for the upcoming school year. My best friend, Dana, and I started shopping for supplies together in sixth grade, when our parents let us cross the busy street to Target by ourselves, and continued through high school. It was…

The first step is admitting you have a problem, right? My name is Jackie, and I’m fanatical when it comes to preparing for a vacation. It’s unclear whether this compulsion would have presented if we’d had a “typical” family, or if it only manifested because of my daughter Cammy’s Rett…

Kids are absolutely incredible fundraisers. They have a million different ideas. With an adult’s help organizing, they can raise so much money and awareness. One of my childhood friends, Megan, is an elementary teacher. Upon learning about my 12-year-old daughter Cammy’s Rett syndrome diagnosis, Megan immediately knew how she…

I grew up a YMCA kid. We lived across the street from the Leaning Tower YMCA in Niles, Illinois, a landmark for anyone who grew up on the north side of Chicago. My dad loved the replica of the Leaning Tower of Pisa so much that when he added…

In the spring of 2013, while visiting cousins, my daughter, Cammy, who was 4 at the time, saw her 10-year-old cousin Carly’s summer bucket list lying on a table. I read it aloud to Cammy. “Go to the beach. Go to a museum. Sleep over at my cousin’s house.”…

We can always give something. Some give money to their favorite charity. Others donate their time to distribute goods at a food pantry. Many do a random act of kindness by paying for the person behind them at a drive-thru. People give thoughts, prayers, hugs, and condolences during a tragedy.

Whether we realize it or not, we carry someone through on a daily basis. A dad makes breakfast for his son to carry him through final exams. Teammates cheer from the sidelines to carry their team through to the end zone. A friend delivers coffee to carry a mom…

For parents of neurotypical children, summer should be easy, busy, and carefree. They might take their kids to the pool and watch them jump off the diving boards, zip down the waterslides, and splash in the water while parents sit nearby on lounge chairs. Parents might look out the window…

When Cammy was 14 months old, she and her cousin Olivia took a weekly toddler music class called Wiggleworms. I dreaded trying my best each week to put a smile on my face and pretend to have fun. I was puppet master to my 14-month-old, acting as her…

My family is overwhelmingly grateful for the COVID-19 vaccination. We can breathe a little more easily now that our daughter Cammy is protected. We are infinitely thankful for the dedication of the people in the scientific and medical fields. The COVID-19 pandemic has been extremely difficult on all…