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When our late daughter, Cammy, was diagnosed with Rett syndrome in 2011, our family entered a world we knew very little about. Like so many families receiving a rare disease diagnosis, we had endless questions, and it was difficult to find answers. Over time, the International Rett…

Last in a series. Read part one.  In part one of this tale, Barry Ross Rinehart told us how his casual offer to help a stranger with slides for a talk about Rett syndrome led him to direct a full-length documentary, “Silent Angels: The Rett Syndrome…

First in a series. It’s October, which means it’s Rett Syndrome Awareness Month, which means it’s a good time to have an email chat with Barry Ross Rinehart. So I did, and he was gracious enough to tell me about the making of “Silent Angels,” a documentary…

Herewith another installment of the T-Shirt Chronicles, in which I relate episodes from our family’s life with Rett syndrome as represented by garments in our ridiculously outsized collection of T-shirts. Some of those T-shirts are mine. Some belong to my wife, Donna, or my daughter Abby, who has Rett…

My late daughter, Cammy, was diagnosed with Rett syndrome in 2011. After a few months of being connected with the International Rett Syndrome Foundation, participating in the foundation’s Natural History Study, attending a conference, and meeting other families living with Rett, I became a point of contact for…

National Grandparents Day was this past Sunday, and it was great to see social media photos and videos of grandparents supporting and loving their grandchildren who have Rett syndrome, the condition that my daughter Abby has endured for 29 years. Abby, alas, has to be content with my…

This was our second summer without Camp Communicate. Our daughter Abby, who has Rett syndrome and is nonverbal, never really got the full benefit out of the camp, which sought to encourage nonverbal kids to use their communication devices. But the absence of the camp has left a…

I confess that I am a T-shirt hoarder. I have dozens, many of them embarrassingly old. How bad is my habit? I am in my Social Security years, and I still have a T-shirt from my high school fraternity. And yes, it still fits, kinda. Occasionally I make an effort…

If, like me, you have a child with Rett syndrome and an older, neurotypical child, it’s easy to fall into the “she’ll never” cauldron of gloom.  “She’ll never get two MVP awards in high school softball like her older sister.”  “She’ll never earn three college degrees like…

Having a child with special needs can sometimes feel like you are constantly dodging punches in a boxing ring. Yet you can’t throw any punches yourself; you’re just playing defense and trying to protect your child from the next challenge. Rett syndrome slowly robs a child of abilities many…