Recently, I was talking to Carmen’s nursing supervisor who happens to be Jewish. She mentioned Dor Yeshorim and how the founder, Rabbi Josef Ekstein, lost four children to Tay Sachs. I wasn’t familiar with this organization so after she left, I googled Dor Yeshorim (which means “upright generation” in Hebrew) and Rabbi Josef Ekstein.

After losing four children to Tay Sachs, Rabbi Ekstein started Dor Yeshorim in the 1980s in order to minimize the incidences of genetic diseases in the Jewish population. Because of his own personal tragedy, Rabbi Ekstein was determined to help others avoid similar heartbreak.

Dor Yeshorim screens Orthodox Jews for various fatal genetic diseases, including Tay Sachs. Ashkenazi Jews of Eastern European descent have a 1 in 25 chance of being Tay Sachs carriers so testing is a very big deal. Orthodox Jewish high school students are given blood tests to determine if they have the Tay-Sachs gene. Instead of receiving direct results as to their carrier status, each person is given a six-digit identification number. Couples can call a hotline and if both are carriers, they will be deemed ‘incompatible’ and advised not to marry. Individuals are not told they are carriers directly to avoid any possibility of stigmatization or discrimination.

What I find fascinating about this is that communities at higher risk for Tay Sachs and similar diseases are so aware of the ramifications of having a child with Tay Sachs that they would choose not to marry to prevent having a child with Tay Sachs. That speaks to the horror of this disease.

It also speaks to the complete oblivion most of the rest of us live in. Not until after Carmen was diagnosed did I even think of the possibilities of diseases I might be carrying. And yes, I did go get tested for Tay Sachs…after finding out about Carmen. I realize that the likelihood of adopting and giving birth to a child with Tay Sachs would be ridiculously rare. But, rare becomes much more meaningful when you adopt a child with a variation of Tay Sachs only recorded 10 times in history. Rare becomes real.

Dor Yeshorim has been accused of eugenics (selective breeding) to which Rabbi Josef Ekstein stated:

“I am a Holocaust survivor. I was born in the middle of the second World War. I hope that I am not a suspect for practicing eugenics. We are trying to have healthy children.”

Because of genetic testing, Tay Sachs disease has been drastically reduced in the Jewish population. In fact, most of the families we have met with children with Tay Sachs are not Jewish.

I do not feel knowledgeable enough to discuss the moral and ethical dilemmas behind genetic testing but I certainly understand the heartbreak and tragedy of Tay Sachs.

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Long ago Carmen lost the ability to show any emotion. A few days ago I noticed this tear coming out of Carmen’s eye. Most likely it was just a watery eye. But, it made me sad.