Jackie Babiarz, Rett Syndrome Columnist —

This Saturday, April 29, our family will host our 11th annual Cammy Can’s Cinderella Story fundraiser for the International Rett Syndrome Foundation in honor of our daughter Cammy, who was diagnosed with Rett syndrome in 2011 when she was 20 months old. Over the past 11 years…

On my daughter’s birthday on March 10, news of the first-ever treatment for Rett syndrome broke. While it was Cammy’s big day, this was an incredible gift of hope to all of us. The approval by the U.S. Food and Drug Administration (FDA) of Daybue (trofinetide)…

In our special needs world, we sometimes get gut-punched. I felt this first when our daughter Cammy was diagnosed with Rett syndrome in 2011. I still feel it when we add equipment or a clinician to her team. Even though I try to shift my mindset to realize that…

My daughter Cammy has profound special needs due to Rett syndrome, which leaves me terrified when someone else has to take over her care and needs. But I’ve learned to handle it. I do as much as I can to prepare myself, my child, and her caregivers, which…

As a parent of a child with special needs as well as one who’s neurotypical, I have a lot to juggle and balance. Our firstborn, Cammy, has Rett syndrome. She was 20 months old when she was diagnosed, and at the time I was eight…

As a rare disease family, we live in extreme peaks and valleys. The swings are swift, intense, and dramatic. Last month, my husband and I spent a weekend celebrating my 43rd birthday with loved ones in Las Vegas. My in-laws watched our daughters so we could get away. My birthday…

There are a few things I enjoyed about how people responded to the COVID-19 pandemic. I loved the birthday car parades, socially distanced trick-or-treating at Halloween, my husband working from home, and how life in general seemed to slow down. From the perspective of a special needs…

Thanksgiving 2010 was the first emotional roller coaster holiday I experienced. Two days earlier, I had taken my 18-month-old daughter, Cammy, to a physiatrist to see if she could provide any insight as to why Cammy was regressing. The physiatrist didn’t know, but she called in another doctor…

Last in a series. Read part one here. On June 10, 2016, Cammy, my daughter with Rett syndrome, and I had a date to see the blind singer Andrea Bocelli and his violinist, Caroline Campbell, in concert for the second time. This time we were Campbell’s guests.

First in a series. My dad absolutely loved listening to Andrea Bocelli, Frank Sinatra, and any musician of Italian descent. I wondered if he listened to Bocelli when he babysat with my firstborn, Cammy, when she was a baby, because she absolutely loves the singer’s music and his…