A big reason I write this column is because we are now the family I desperately wanted to see when I researched Rett syndrome 11 years ago. I wanted to see a family making it work, and who gave me hope that raising a Rett child was…
The IncRETTibles – a Column by Jacqueline Babiarz
When my daughter Cammy was diagnosed with Rett syndrome at 20 months, I thought about all the life events she would never get to do. What came to mind first were the big things — having children, getting married, getting her driver’s license, and living on her own.
At every single curriculum night, parent-teacher conference, and Individualized Education Plan meeting, I cry. But I’m not crying for the reasons others might suspect. Instead, I cry tears of joy and appreciation that my daughter, Cammy, in in such good hands at her school. Handing over a child…
Ribbons of various colors help to increase social awareness of numerous disabilities, illnesses, and causes. Purple is the color designated for Rett syndrome. Governors in several U.S. states have signed proclamations declaring October to be Rett Syndrome Awareness Month. The International Rett Syndrome Foundation (IRSF) has set a goal…
Our little superhero, Cammy Can, was created by an incredibly gifted artist, Jenn Kim, shortly after our daughter, Cammy, was diagnosed with Rett syndrome in 2011. To help Jenn create a perfect superhero, we shared Cammy’s journey, gave her a photo…
My 12-year-old daughter, Cammy, has Rett syndrome. Some days, Rett syndrome has Cammy. During the early-onset stage, which typically occurs between 6 and 18 months of age, children may experience abnormal hand movements, difficulty sitting independently, and speech or language problems. Cammy was no different. Repetitive hand movement…
Do you ever wish kids came with a manual? Well, mine does. The International Rett Syndrome Foundation (IRSF) provides many wonderful tips and hacks for parents to navigate their way through this world of Rett syndrome. For school settings, some parents of children with Rett syndrome provide their child’s…
Three months after my daughter Cammy was diagnosed with Rett syndrome at age 2, we had the unique opportunity to participate in the International Rett Syndrome Foundation’s Natural History Study (NHS), the most comprehensive study of Rett in the world. The 15-year study collected data on more…
When I was young, back-to-school shopping motivated me to get excited for the upcoming school year. My best friend, Dana, and I started shopping for supplies together in sixth grade, when our parents let us cross the busy street to Target by ourselves, and continued through high school. It was…
The first step is admitting you have a problem, right? My name is Jackie, and I’m fanatical when it comes to preparing for a vacation. It’s unclear whether this compulsion would have presented if we’d had a “typical” family, or if it only manifested because of my daughter Cammy’s Rett…
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- Why my husband continues to fight for a cure for Rett syndrome
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- How ‘Silent Angels’ and Julia Roberts put Rett syndrome on the map, part 1
- Supporters urged to ‘go one step further’ this Rett awareness month
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