A Rabbi’s Perspective on Jewish Genetic Diseases

Gina was just fourteen years old and when she died. She had such a positive and upbeat attitude, despite facing major health issues caused by Familial Dysautonomia, a Jewish genetic disease.

by Rabbi Sarah Freidson

Gina died when I was a junior in high school. She was just fourteen years old and had such a positive and upbeat attitude, despite facing major health issues caused by Familial Dysautonomia, a Jewish genetic disease. She was my friend Scott’s younger sister, and she loved hanging out with us “big kids.” We liked being with her, too, with her sunny disposition and sweet personality. Gina brought joy with her wherever she went.

Gina’s passing was the first time I attended a funeral and shiva for a young person. I’ll never forget how difficult it was to try to comfort my friend and his family in the face of their unspeakable loss. What do you say when a fourteen-year-old dies?

Fast forward nearly fifteen years, to the first time I counseled a couple before being the Rabbi officiating their wedding. Amidst discussions about the ceremony and their hopes and expectations for their marriage, I brought out material about Jewish genetic diseases. With Gina’s smiling face in mind, I encouraged them to get tested before they started trying to have children. I told them about Gina, about the way I learned about loss at a young age. I described her family’s heartbreak. I tell every couple I marry about Gina and urge them to get tested.

When I was thinking about starting a family, I received testing from JScreen. I was so grateful to the organization for providing me with peace of mind before embarking on my journey as a parent. It was so easy, and I knew I was in good hands.

A version of this post was previously published on jscreen.org and is republished here with permission from the author.

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