Jewish Genetic Disease: A Congregational Discussion
by Rabbi Lawrence R. Sernovitz
We recently heard the news that a young family in our congregation gave birth to a child with a Jewish genetic disease that we had never heard of. When it comes to Jewish genetic diseases, we weren’t aware that there were others beside Tay Sachs. The family is devastated with the diagnosis and is trying to figure out what to do and how to cope. The child is failing to thrive and it is becoming increasingly difficult for her parents to provide adequate nutrition.
This raises many questions for us as a congregational community. How do we react to the news? We have no idea what to expect and want to be there for the family. How can we support them? We are truly at a loss. Any help you can give us would be most appreciated.
There is much that congregations can do and your question is an important one. Expectations are very difficult as this depends on each individual family. The most important course of action that you can do is to listen, to provide support, and be compassionate. Reach out to the family and be there for them during this difficult time.
I give this advice based on personal experience. For the first four months of my son’s life, he was unable to suck and swallow, inhibiting his ability to get nutrition and gain weight. He was diagnosed with “failure to thrive” and suffered immensely. After visiting many specialists, at four months old, he was diagnosed with a Jewish genetic disease called Familial Dysautonomia. Like many of you, we had never heard of this disease and had no idea what to expect. It was devastating and we knew our son would not be like the children born to our friends. Would our son have a normal childhood? Would he be able to participate in activities along with his peers? How would his disease affect his education? These were just a few of the questions we had.
What we needed the most was a support system to help us through the difficult times that were to come. Besides our close friends and family, who else could we count on? Our congregational community was truly there for us. Soon after his diagnosis, I send out a letter to our congregation, informing them of Sam’s diagnosis. One part of the letter read as follows,
It is very difficult for me to write these words to you today. However, as members of this caring community, Becky and I feel it is important to share with you the events that have recently taken place, and which have changed our lives forever…
Martin Buber once wrote, "Children have a future, a destiny that is all their own. But they will not have to face the infinite universe alone, nor worry that they will be unprepared, for they are surrounded by loving family and friends who care deeply for them. Each of us brings them the gift of our love and our dedication, helping them to feel understood, supported and special as they go through life."
We have no doubt that our son will have the love and support of our community and for that we offer your our heartfelt thanks. We will certainly need your support and understanding as the months and years go by and will keep you advised of any new developments.
Since our son was born, almost three years ago, we have been overwhelmed by the kindness and generosity of our congregational community. I have always understood the synagogue to be a kehilah kedoshah, sacred communities where people look out for one another. When one individual in our community suffers, we all suffer. As Jewish tradition teaches, “Kol Yisrael arevim zeh b’zeh,” all Israel looks out for one other.
The needs of each family will be different and the best thing to do is reach out and ask how you can help. In many cases, families will tell you they don’t need anything, when in reality they don’t even know where to start. Offer a meal, help with errands, or just stop by to lend your support or to play with their child. Many times, just being there can be all the support that they need.
Beyond this personal support, here are three easy ways that your congregation can do can make a difference:
- EDUCATION AND AWARENESS: Educate yourself, the board, and your congregation about Jewish Genetic diseases. The Victor Center for Jewish Genetic Diseases at Albert Einstein Medical Center in Philadelphia is a great place to start. Their website is filled with useful information. You can also visit the website for the Jewish Genetic Disease Consortium (JGDC). Both organizations have pamphlets that you can have on display and personnel that give educational presentations.
- PREVENTION: Emphasize to your clergy the importance of pre-marital screening. Speak with them and make sure they have up to date information. Make sure that they encourage, if not require all engaged couples to be screened before marriage. You can visit the National Society of Genetic Counselors website for a listing of genetic counselors and screening centers nationwide. All counselors are accredited and are excellent resources for you and your couples.
- SCREENING: Host a genetic screening in your community with other synagogues, or by yourself if you are the only one in the area. You can make it a family fun day for the community, with games and activities, to create additional awareness.
Did you know that 1 out of 5 Ashkenazi Jews are carriers for at least one of 19 severe and many life threatening Jewish Genetic diseases. We are the only ethnic group with this reality. The only way to know if you are a carrier is to be screened, i.e. have a simple blood test or give birth to a child with the disease.
How can you help ensure the birth of healthy babies? Be screened, inform everyone you know to be screened prior to each pregnancy, organize a community screening. A little effort can go a long way.
Rabbi Larry Sernovitz serves Old York Road Temple-Beth Am in Abington, PA.
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