My first child, Evan, was born in August of 1994. We joyfully watched him grow and develop normally for the next six months. He was a happy baby, always smiling and laughing. We had all the normal hopes and dreams for his future. As Evan got older, we noticed a few things that concerned us. Our friends’ children were rolling over, sitting up, crawling, standing, and interacting with others. Evan was not able to do any of this; he just watched the other children, smiled and laughed at them. With time, his laughter began to fade and his observations became a distant stare. We also started to notice that he was having difficulty eating. Jeff and I tried hard to fight the tendency to compare Evan to other children his age, but by 10 months, we could no longer ignore the signs.
We took Evan to the pediatrician for a well-visit and were advised to see a pediatric neurologist. The next three months were spent hopping from doctor to doctor, hospital to hospital, where Evan underwent numerous uncomfortable and often painful tests. At thirteen months we still had no diagnosis and he continued to lose milestones. Then, midway through an eye exam, a “cherry-red” spot was noted on Evan’s retina. The doctor told us that this was an almost certain indicator that Evan had Tay-Sachs disease.
The diagnosis did in fact turn out to be Tay-Sachs disease. Hearing this news was beyond devastating; it was like having a dagger stabbed through my heart. We discovered that Evan would not live to reach his fifth birthday. Hopes and dreams of watching Evan grow up happy and healthy quickly turned to grief and anger about losing him forever.
Jeff and I wanted to care for Evan at home so that we could spend as much time with him as possible. Evan’s disease quickly progressed -he suffered multiple seizures daily and had respiratory difficulty, which required us to provide chest physical therapy and frequent suctioning. He eventually became blind and deaf. We had a feeding tube surgically inserted so that Evan would be able to stay properly nourished and medicated. Through all this, we tried our best to create a lifetime of memories with Evan in the short time he had left. We took him to the park, pool, beach and zoo regularly. He was constantly surrounded by people who loved him. Evan lost his battle with Tay-Sachs when he was almost 4 ½ years old. Although we knew that his disease was terminal, we were completely shocked when he died. There is no way to prepare yourself for the death of a child.
To honor Evan, I decided to turn our tragedy into something positive so that other families would be spared the suffering that we experienced. Having a child with a rare disease has made me realize the importance of raising awareness about Tay-Sachs and the related genetic diseases. Since Evan’s diagnosis, I have been involved with the National Tay-Sachs & Allied Diseases Association (NTSAD) on both a local chapter level and on the national level. I am currently the President of NTSAD and the Co-President of the New York Area Chapter of NTSAD. This organization has provided me with ways to channel my loss and sadness over Evan’s passing by working towards education, research and family support services.
Jeff and I now have three other beautiful and healthy children who fill our lives with joy and give us the strength to carry on. With each of my subsequent pregnancies I was able to have a CVS test performed to rule out the presence of Tay-Sachs. Our children have grown up helping Jeff and I honor Evan by getting involved in all fundraisers that we have run. Not a day goes by when I do not think about my first son and how my life would be if he were still alive.
Shari Ungerleider is the Project Coordinator for the Jewish Genetic Disease Consortium, where she runs educational programs for the medical, rabbinic and lay Jewish communities about the importance of preconception carrier screening for Jewish genetic diseases. Shari, along with her husband Jeff and father Stanley Michelman, founded the Evan Lee Ungerleider Foundation when her son was diagnosed with Tay-Sachs disease. This Foundation is part of the National Tay-Sachs & Allied Diseases Association, New York Area Chapter, where Shari been a board member for over 15 years. Shari has four children: Evan (mentioned above), Justin, Leigh and Sydney. She lives in Wayne, NJ with her family.