Jackie Babiarz, Rett Syndrome Columnist —

Have you ever searched for a gift for nonverbal, nonambulatory child who can’t use their hands? Not much shows up. People with Rett syndrome are difficult to shop for. When my daughter Cammy was younger, stuffed animals filled her gift bags. Then, it was socks, infinity scarves, and…

In 2019, my two daughters, who are two years apart, attended different schools. My neurotypical daughter Ryan’s school had a winter concert, where all grades sang songs prepared during music classes. My older daughter, Cammy, who has Rett syndrome, did not have a winter show at her…

On my fifth birthday, I closed my eyes and wished for a two-wheeler with a banana seat and streamers coming out of the handlebars. I blew out the candles. A couple weeks later, on Christmas, the bicycle appeared. On my 11th birthday, I closed my eyes and wished that my…

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…