A Very Personal Note From Midbar Kodesh Temple Member Marcy Welt
Milestone birthdays should be celebrated in big ways. A 4 year old Jordan said that we should have a birthday cake every year in honor of his sister. On her 2nd birthday, the day of her unveiling, we built a sukkah with Dr. Andy Eisen, a pregnant Diane and a young Jonathan, a tradition still shared by the families, all these years later.
Jessica Ann Doctors was born on October 4, 1996, the second child to Tiffany and Steven Doctors. She would be 21 years old this week. We lost her to Tay-Sachs, a Jewish genetic disease, when she was 19 months old. Jerry and I and one of her paternal grandparents had been tested in the 1970s, when testing was first available. Those tests said we were not carriers. We were told we could not pass down the Tay Sachs gene. One of the tests, the best available at the time, was inaccurate. That test result was wrong. The fourth grandparent, who was not tested, was also a carrier.
It was a very long 19 months. There are still memories built in like vignettes. Minna Ogintz planning her Simchat Bat. A lot of pink table clothes that were with us many years later. Karen Simon holding her, remarking that she never gets her hands on a little girl. She has grandchildren of her own now. No girls. Dr. Howard Baron sitting with us at Sunrise Hospital, explaining what just happened, why, and what would be. Harvey Riceberg making sure that a special formula needed was available to us at an affordable price. The Kahans bringing over a stroller that could hold medical equipment so we could go out for a walk. My dad, our dear Grumps, doing our grocery shopping and running errands for us. Countless acts of loving kindness.
More memories flood in. Andy sleeping with us at Hospice and helping us say goodbye. Our son Cory holding his sister and brother-in-law as he recited a prayer. A house filled with friends, new and old, for a full 7 days. Tiffany, calling me to say that she chooses life, and would enter into a new program called PGD, that would ensure the birth of a healthy child. Steven rubbing new born Elizabeth with a warm towel, like you do with a new puppy, until she cried out in joyful sound.
Going with Tiffany to sit with a family who just lost a child. Talking with a grandparent in grief. Meeting Ze'ev Yacobovsky in Jessica's Garden as he shared the plans for the monument. We don't do monuments at Midbar, I told him. No, we don't, he said, but we are doing this one.
So very proud of Jordan, who has selected to serve others when he graduates law school next year. And of Lenna and Jordan for accepting their responsibility. Taking pride in Elizabeth when she spoke at a memorial assembly for a teenaged friend. And again, recently, as she gathered the strength to offer to siblings who lost a sister. She had also lost a sister, she said, and knows what happens in a household where someone is missing.
This is not a "Why I Give" article though it could be. It is a tribute to my granddaughter Jessica Ann, and it is meant as a reminder that accurate testing is now available for almost 20 Jewish genetic diseases. None of them are good. Many are fatal. But families do not have to suffer a loss any more, and it is our personal responsibility to retell Jessica's story, particularly at milestones.
A very short and simple story. Do not rely on genetic testing from past generations. Have each child on their 18th birthday, or younger if they are sexually active, be tested for all Jewish genetic diseases. Because testing parameters and values change retesting should be done again when couples begin family planning. Children of intermarriage and children who are adopted should also be tested as the genes are quietly passed from generation to generation. Make informed decisions with a genetics counselor.
Later this month Midbar Kodesh Temple will be a co-sponsor of genetic testing being done in Las Vegas through JewishNevada by J-Screen. J-Screen offers affordable and convenient saliva testing which is often covered by insurance. It is our understanding, however, that the most conclusive test available for Tay-Sachs Disease is a blood draw. It is important to us to share this information and it is important for you to follow through after taking the saliva test.
Twenty-one years have passed, and not a day goes by that we do not think about Jessica. Tiffany and Steven have taught us how to set the pain aside to enable us to move forward. They have taught others to do the same. I have always liked the phrase "Capture the Past and Create the Future." This is our past and this is your future. If you are of age, take the tests that are now available. If you have a child, put Jewish genetic testing on their medical calendar for each of your children.
Happy Birthday, Jessica. Loving you always, AMMA