Whether we realize it or not, we carry someone through on a daily basis. A dad makes breakfast for his son to carry him through final exams. Teammates cheer from the sidelines to carry their team through to the end zone. A friend delivers coffee to carry a mom…
The IncRETTibles – a Column by Jacqueline Babiarz
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…
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
- 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