Personal Story: Jillian Segel
From the moment you become a parent all you want to do is protect your child. During this past week’s Associate Board meeting, I was intrigued by the very special story of Art Kessler. He shared his personal battles with a rare Jewish genetic disease and the great lengths he and his wife went to protect their children from inheriting this disease.
At the age of nine, Art began showing mild symptoms of Dystonia, a neurological movement disorder, in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures. As Art grew, so did his symptoms. His feet started turning in and he experienced arching in his back among other very painful symptoms. One thing he said that really stuck with me was that he never considered himself disabled because he could do everything anyone else could. His strong will and positive mentality will stick with me forever.
Several years later Art, now married, and his wife posed the question: what about kids? With the same unstoppable attitude he’s clearly exuded his entire life, he and his wife underwent PGD IVF. This is a form of IVF that allows you to screen embryos not yet implanted, for potential genetic disorders such as Dystonia. This level of medical technology amazes me. Through this process they were able to conceive two children without the risk of passing on the Dystonia gene. And today, through new treatments, Art is living with 80-90% less symptoms.
Art’s story really showed me the importance of disease prevention and the role genetic testing can play in our lives. It got me thinking about my own journey.
Two years ago, I was told my insurance wouldn’t cover the pricy genetic tests unless I was already pregnant. At the time, I didn’t know about the Center for Jewish Genetics and the programs they offer. In fact, I didn’t know much about the tests, the process and what it all meant. So I waited to get tested until we were pregnant with my daughter. But, in those two weeks, while we waited for the results, I thought a lot about this little miracle I was carrying around. And, any woman who has been pregnant knows you spend about 99% of those 40 weeks thinking, worrying, eating, peeing and worrying some more…So I did what any pregnant woman would do, I thought a lot…what if I was a carrier? What if my husband was a carrier too? What if we pass a genetic disorder on to our child? Thankfully I was not a carrier and the testing stopped there, but unfortunately, it doesn’t always end this way for other families.
There are many people with stories like Art’s. Many with stories about cancer. My hope is that through organizations like the Center for Jewish Genetics we can help educate people and arm them with the information they need to better understand and help prevent these diseases.
- Jillian Segel, Former Associate Board member