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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…
Kids are absolutely incredible fundraisers. They have a million different ideas. With an adult’s help organizing, they can raise so much money and awareness. One of my childhood friends, Megan, is an elementary teacher. Upon learning about my 12-year-old daughter Cammy’s Rett syndrome diagnosis, Megan immediately knew how she…
I grew up a YMCA kid. We lived across the street from the Leaning Tower YMCA in Niles, Illinois, a landmark for anyone who grew up on the north side of Chicago. My dad loved the replica of the Leaning Tower of Pisa so much that when he added…
In the spring of 2013, while visiting cousins, my daughter, Cammy, who was 4 at the time, saw her 10-year-old cousin Carly’s summer bucket list lying on a table. I read it aloud to Cammy. “Go to the beach. Go to a museum. Sleep over at my cousin’s house.”…
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