The IncRETTibles – a Column by Jacqueline Babiarz

When our late daughter, Cammy, was diagnosed with Rett syndrome in 2011, our family entered a world we knew very little about. Like so many families receiving a rare disease diagnosis, we had endless questions, and it was difficult to find answers. Over time, the International Rett…

My late daughter, Cammy, was diagnosed with Rett syndrome in 2011. After a few months of being connected with the International Rett Syndrome Foundation, participating in the foundation’s Natural History Study, attending a conference, and meeting other families living with Rett, I became a point of contact for…

Having a child with special needs can sometimes feel like you are constantly dodging punches in a boxing ring. Yet you can’t throw any punches yourself; you’re just playing defense and trying to protect your child from the next challenge. Rett syndrome slowly robs a child of abilities many…

Registration. Physical. Supplies. Even though there is still over a month left of summer, I’m already preparing for the start of a new school year. I’m not only getting myself ready, but also my daughter and my students. My daughter, Ryan, has her sports physical completed by mid-July so there…

My husband, Billy, loves to golf. After working hard all week, there is nothing he enjoys more than spending a few hours on the golf course. These days, I don’t mind how much time he spends golfing. In fact, I encourage it. But it wasn’t always that way. When our…

In 2009, my husband and I were living in a third-floor condo in Chicago. My brother and his wife lived just 2 miles away. Within eight days of each other, we both welcomed beautiful baby girls into the world. It felt like a dream come true. Our daughters would grow…

Before our late daughter, Cammy, was diagnosed with Rett syndrome shortly before her second birthday, she was already receiving services through our state’s early intervention program. For 10 months — from 12 months old to 22 months old — her days were filled with appointments for physical therapy,…

Handprint art. Construction paper flowers. Homemade cards. Acrostic poems spelling out M-O-M. These are the images that come to mind when I think of Mother’s Day. For many years, my oldest daughter, Cammy, proudly gave me these treasures. Because she had Rett syndrome, Cammy was never able to…

There is one month of school left. For many families, that means countdowns, celebrations, and the final stretch of a busy school year. For me, it is a quiet reminder of all the moments my late daughter, Cammy, should be experiencing right now. Some of these milestones are exciting,…

“How do you tell your child their sibling is going to die?” That is a question I never expected to Google. In early November 2023, our oldest daughter, Cammy, was on a BiPAP machine in the pediatric intensive care unit (PICU) when she stopped breathing. The medical team rushed…