It’s My Future

I don’t plan on having kids in the near future, but my newfound knowledge that I’m a carrier for this disease will stick with me for the rest of my life.

By Ben Suster

I have a Bachelor of Science in biotechnology from the University of Central Florida and, in short, I have an understanding of the profound importance of our DNA and its longstanding impact; whether with regards to my life or the life of my future generations. When it comes to my well-being and the well-being of my unborn children, ignorance is the farthest thing from bliss. Knowledge is power; and it is the epitome of an irresponsible disservice to me, my future Jewish wife and, most importantly, my children to not have my DNA screened.

I thank G-d every day that I’ve known nothing but good health my entire life. But I was still notably nervous. Who knows what else my DNA codes for? What I may be prone to? What I may be a carrier of? A large Jewish family is something I have an overwhelming desire to start. I can think of few things more meaningful. After signing up for a JScreen sample collection kit, my plan was this: If I was to receive disheartening news after my saliva sample was tested, I would cross that bridge. But not knowing was out of the question. The results wouldn’t discourage me from starting a family. The results might encourage me to prepare and take the necessary steps to start a HEALTHY family.

I received my results and I learned that I was a recessive carrier for Walker-Warburg Syndrome. The genetic counselor explained to me that if my wife were a carrier for it as well, then my offspring would have a 25% chance of inheriting the disease. I had never heard of it before and immediately began researching. It’s a debilitating disease that produces muscular dystrophy as early as birth. Naturally, any child of mine in possession of such a disease would be a tragedy. However, I couldn’t be happier after seeing the results of my test as I now have the awareness to prepare properly. I don’t plan on having kids in the near future, but my newfound knowledge that I’m a carrier for this disease will stick with me for the rest of my life. My future wife will understand that I’m a carrier and will be tested with the help of JScreen as well. We will now have the capabilities to prepare adequately and make the necessary decisions when the time comes. But now I’m just grateful I have the invaluable opportunity to prepare and to make decisions; rather than just be left in the dark and be faced with a devastating surprise.

Our DNA defines who I am and who my people are. A favorite fact of mine is that a Jew from Morocco has more genetically in common with a Jew from Poland than with a non-Jew from Morocco. More than any other people in the world, the Jewish people face the consequential obligation to have their DNA screened. Knowledge is more than just power. In this case, it is the opportunity to provide my future children with the best position possible to have Jewish children of their own.

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

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