About Me
About the author
Carla Steckman is a therapist working in the Hudson Valley. She has a background in theater and spent years as an elementary school teacher. She is a writer who has published essays about parenting in the face of certain loss, the value of palliative care, and the freedom and power that comes from acceptance. She lives in Upstate New York with her husband, children, and cockapoo.
Email at carlasteckman@gmail.com
It all started when…
As a result of inaccurate genetic screening, Talia, my beloved third child, was diagnosed with Tay Sachs Disease in August 2016. (read more about the disease at NTSAD) She was a wonderful child, calm, warm with inquisitive eyes, but without a key enzyme essential for life. She passed away in July 2017 at the age of 23 months. She loved being held and being near her siblings. The weight of her body is as familiar to me as my own heartbeat and will stay with me forever.
My family has refused to let this unimaginable tragedy swallow us whole or warp our positive view of the world. We accepted the reality of Talia’s diagnosis early and benefited from a strong palliative care team. We didn’t have control over the inevitable outcome, but we did have great control in the methods with which we would help her to live out her days.
You can donate directly to the National Tay Sachs and Allied Disease Association and help other children with Tay Sachs at NTSAD