The IncRETTibles
— Jacqueline Babiarz

When my oldest, Cammy, turned 1 in 2010, I began taking her to various appointments to find a reason why her skills were regressing. We went to a neurologist, hearing and vision specialists, physical therapists, occupational therapists, and developmental therapists. After nearly a year, a physiatrist recognized her…

A steady flow of firefighters, emergency medical technicians (EMTs), and police officers came through our home a couple of weeks ago — but not for the same reason as they have in the past. We had to continually reassure our medically fragile daughter, Cammy, 14, that the firefighters and…

I tend to become quite envious when I see parents selling their no longer needed baby items. It means they’re done with changing diapers, pushing strollers, and cleaning up drool. Their children are at a more independent stage of development. Having a child with Rett syndrome means that I will…

All my life I’ve heard inspirational phrases such as “Carpe diem” (“seize the day”), “You can’t take it with you,” and “Life is short.” They were just words to me until I had a child with profound special needs. In 2011, our firstborn child, Cammy, was diagnosed with…

For the past two months, I’ve been overwhelmed with thoughts of an upcoming milestone: My oldest, Cammy, will be graduating eighth grade at the end of this month. I imagine this transition is difficult for a lot of parents, especially if it’s the first child who’s going through…

Each year, we give out a Ripple of Hope Award at our annual fundraiser in honor of our daughter Cammy, who has Rett syndrome. It’s given to a person or group that gives us hope for a future of inclusion, acceptance, and embracing one another’s differences. This…

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…