Because of Dylan: My Mission to Let You Know About Jewish Genetic Diseases



by Cindy Singer

My name is Cindy Singer. November 6, 1996- a day that my son, Dylan was born with familial dysautonomia (FD), one of 19 devastating Jewish Genetic Diseases (JGD’s). It is a day that will forever be remembered as one of the saddest days of our lives.

Along with a host of other life threatening symptoms associated with FD, Dylan is also Autistic and non-verbal. 10% of those afflicted with FD are Autistic.  Amazingly, Dylan communicates with an iPad via a special needs voice out-put program called the Proloquo.

As a family we knew that Dylan would have profound health struggles and developmental challenges but with the help of our community or what I like to call “our village” we learned to build a life “one-day-at-a-time”.

Initially our synagogue responded by keeping somewhat of a distance from us. I imagine this happened because everyone had heard of Tay Sachs but no one had heard of FD. And being only human, they did not quite know how to best navigate this new territory.

However things took a wonderfully positive spin when we decided to enter Dylan in our synagogue preschool. The preschool Director was an amazing support and Dylan attended for 2 years accompanied by his nurse.

As the years passed, managing Dylan’s ongoing health issues and frequent hospitalizations often kept us from actively participating in synagogue life.  But as Dylan approached his 13th Birthday it occurred to me that I wanted him to become a Bar Mitzvah. There had been so many missed milestones, and I did not want this to become another. The question – how were we going to make it happen”?

We first had to tackle the question of affordability. In spite of health insurance coverage there were still many out-of-pocket medical costs required to take care of Dylan.  The additional expenses sadly, but completely prohibited us from being able to maintain membership in a synagogue. But as we soon discovered, our synagogue welcomes members regardless of their ability to pay.  And after one confidential conversation with the Executive Director, we were graciously back “in the fold”

In 2010 Dylan became a Bar Mitzvah.  Dylan’s grandparents draped him in the Tallis that they had purchased for him in Israel.  Jake, (the son of very good family friends) along with the help of a wonderful tutor recorded the prayers and the last line of the Torah portion into Dylan’s iPad. Each prayer was assigned a corresponding photo. When it came time to read, Dylan would press the photo on the iPad, and lead us in prayer.  With the exception of the last line, I and my two sisters read Dylan’s Torah portion. Dylan led us in the final verse of his Torah Portion and he, in the presence of our beautiful “village” became a Bar Mitzvah

There are no words to describe that day.  It was a day that continues to stand out as one in which all things were possible- it was magnificent!

This past December, while attending my first URJ Biennial, I co-presented a workshop on Jewish Genetic Diseases with Dr. Adele Schneider (Clinical Director of the Victor Center for Jewish Genetic Diseases), Rabbi Edythe Mencher (a specialist with the URJ), and my friend Rabbi Larry Sernovitz (the Associate Rabbi in my own synagogue and, who in a shockingly sad twist of fate, is also the father of Sam- a 3 year old with FD).

Being part of the Biennial and sharing Dylan’s story was one of the most moving life-changing experiences of my life and I share our story not to sadden but to inspire you!  It’s too late for Dylan but not too late for your family and friends to get tested in order to prevent them from being afflicted with any one of the 19 Jewish Genetic Diseases. It’s so simple- really.  Get a blood test and save a life. No child should ever be born with a Jewish Genetic Disease. My vision is that one day when I tell others that my son has a Jewish Genetic Disease, they don’t ask “Oh is it Tay Sach’s?” they ask “Oh, WHICH ONE”?! More information can be found on the URJ website.

 

 Cindy Singer is a member of Temple Beth Am in Abington, PA.

 

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2 Responses to “Because of Dylan: My Mission to Let You Know About Jewish Genetic Diseases”

  1. avatar

    Cindy, your moving comments are so well said and I hope will be read my many. These Jewish genetic diseases are all inherited as recessive traits so a carrier is healthy and has no outward signs that they are a carrier. Testing with a blood test is the best way to find out and prevent the birth of a child with a terrible disease that impacts the child and family in ways hard to describe. Cindy’s blog tells a very powerful story. For couples who find out that they are both carriers for the same condition, this knowledge empowers them with important information. Talking to a genetic counselor will help them to learn about the options to have a baby without the disease. Pre-implantation genetic testing with in vitro fertilization is one option. Once pregnant there is prenatal testing available. To learn more talk to a genetic counselor. Take the step of prevention, get tested!

  2. avatar

    Dear Cindy,
    I am so glad that Rabbi Sernovitz steered me to your message. Because of his influence, my first grandchild was just born a healthy, delicious little girl, because my daughter and son-in law went for testing. It turns out that my son-in law was positive for TaySachs. Luckily, Jennifer was not a carrier, but we are grateful that the testing took place and that a potential tragedy was detected.
    The warm and inspiring story you wrote touched my heart. Your love for Dylan is inspiring for all parents who wish to be creative and flexible in dealing with their child’s uniqueness. OYRTBA is indeed, a special congregation with two amazing rabbis and educational staff who support inclusion as a top priority.

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