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…
The IncRETTibles – a Column by Jacqueline Babiarz
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…
I used to think the stages of grief — denial, anger, bargaining, depression, and acceptance — only…
I was 31 years old and eight months pregnant when our daughter Cammy, not yet 2, was diagnosed with Rett syndrome. Cammy’s grandparents picked her up for a sleepover, and that night, my husband, Billy,…
If you have a child that is diagnosed with a rare disorder, you’ll likely find yourself asking questions like, “How did I get here?” I’ve heard people say that “God only gives you what you can handle.” Well, apparently, God thinks I’m a badass, because…
Recent Posts
- Hindsight illuminates the early signs that my daughter had Rett syndrome
- VNS-tone pairing alters brain proteins in Rett syndrome rat model
- Squishy words, and that elusive cure for Rett syndrome
- Rett mutations may disrupt early development through DNA remodeling
- Going all in on my plan to ease fundraising fatigue
- How eye-gaze technology helped our daughter find her voice
- Mature nerve cells may tolerate higher MeCP2 levels, new study suggests
- Emotional well-being hit hardest in families managing Rett syndrome
- The great snake experiment. Also, goats.
- For the first time in years, Mother’s Day felt like a celebration