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…
The IncRETTibles – a Column by Jacqueline Babiarz
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…
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