I still remember turning the music up loud and dancing wildly that summer night, holding my baby sister Mindy in my arms. She laughed and laughed, enjoying the movement and I joined her. It was unusual for us, because Mindy was not always a happy baby and because a few days before our family had received the worst news, a confirmation of my parents’ worst fears.
Mindy was diagnosed with Tay-Sachs, a degenerative genetic disease that affects mainly Ashkenazi Jews. Now we understood why Mindy, despite initially appearing to be healthy and strong, had started missing her milestones at eight months old. Mindy, dubbed “Super Baby” by our family for her early ability to hold her body upright, wasn’t sitting up on her own or even attempting to crawl. My dad and stepmother took her to see specialists at Children’s Memorial in the city and they quickly discovered the tell tale cherry red spot on her retina. Later I learned that my father yelled at the doctor who invited medical students to come in and look in her eyes. He wasn’t going to allow his daughter to be their science experiment.
I still remember my father and stepmother telling my little brother, Ben, and me as the four of us sat on my bed that evening. It was the first and only time I had ever seen my father cry. My parents explained that Mindy would have to be tube fed when she lost the ability to swallow and that she may eventually suffer from deafness, blindness and seizures. There was a good chance that she wouldn’t live past the age of 4 or 5.
I was only 9 years old and didn’t know how to process this new knowledge that my sister would get progressively sicker and die. Denial quickly set in and I urged my stepmother to look into treatment for my sister. “There’s nothing we can do, Sarah” Susan told me a few mornings later, her back to me while she washed our breakfast dishes. “I am sure there must be something we can do,” I told her. “I am going to the library to find out what sort of research has been done to find a cure”. I saw her shoulders slump, as she told me to face reality, that there was no hope. My brother Ben and I were the product of my father’s first marriage, but Mindy was Susan’s first and only child.
I don’t know what motivated me to push my own sadness aside that summer night I danced with my sister, but I am so glad I did. It was crazed frantic movement and in between songs we would collapse on my bed laughing hysterically. In between her giggles, she looked at me with eyes shining, seeming to ask for more. I picked her up again and again and in my memory the dance and our laughter went on for hours. At some point I remember looking out my bedroom window and seeing my father and brother on the sidewalk in the dark, watching us. I closed the blinds, turned up the radio and got right back to it.
Almost thirty years later I am mother to my own son and fellow dancer, Max, who is named after Mindy. As an infant sometimes the only thing that would calm him down was dancing. There were many nights I clutched him tightly to my chest and danced like crazy until he fell asleep. Max laughed early, only a few months after he was born. His contagious laugh is distinctive and complimented by friends and strangers alike. I know that I am blessed to have him, to have known my sister Mindy, and to have never known a shortage of dance partners in my life.
Registration is now open for the Center for Jewish Genetics' upcoming carrier screening programs for young Jewish adults. To learn more or register, please contact Taryn Brickman at TarynBrickman@juf.org or visit www.jewishgenetics.org.