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When your child is nonverbal and unable to use her body purposefully, it’s intriguing to open an email from her teacher that reads, “Your child has a chance to be in the school’s fall play.” Cammy is a seventh grader who loves socializing with her peers, is enthralled…
The COVID-19 pandemic has changed many family dynamics. Those who used to travel or work in an office have been working from home for the past 20 months, which means couples have spent more time together lately than ever before. My family is no exception, as my husband,…
When our daughter Cammy was almost 2 years old, she was diagnosed with a rare disorder called Rett syndrome. Among the things Rett can steal from our children is their voice. In our community, we often play a game in which we ask, “If our child could have…
Today is my mom’s 78th birthday, and we are going to celebrate it the same way as if she were still with us. I sent my siblings Dunkin’ gift cards to treat them to coffee, like all of us used to have with her. I will…
There are only a handful of people I describe as “someone you want on your team.” My 17-year-old niece, Linden, is one of those people. Among all the perks of marrying my husband, becoming Linden’s aunt is one of them. I met Linden on her first…
Halloween should be fun and not stressful. However, for many years it was neither fun for us nor stress-free. My daughter, Cammy, has Rett syndrome, and we were faced with how to deal with a child with special needs at Halloween. Cammy,…
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…
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…
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