25 years ago, Shari Ungerleider lost her beloved son, Evan, to Tay-Sachs disease. Three years ago, Myra Sack’s cherished daughter, Havi, passed away from the same disease. Though their grief happened years apart and miles away, the cause of that grief is the same. Genetic diseases like Tay-Sachs are devastating to families, and the after-effects of losing a child at such a young age can be felt for decades afterward.
Most families are lucky enough to never encounter the loss associated with Tay-Sachs disease. The rare, inherited disease causes excessive accumulation of lipids in the brain and nerve cells, resulting in progressive neurological damage and eventual death. For many years, the cause of Tay-Sachs was unknown, until in 1969 doctors discovered the common thread: babies with the disease all lacked the enzyme Hexosaminidase A. There is no cure for a disease like Tay-Sachs, but genetic screening can help families identify their risk of having a child with the disease and take steps to ensure their children are born healthy.
The loss of their children set Shari and Myra on a path toward helping other families avoid the heartache associated with this devastating disease. Myra published a book about her story called Fifty-Seven Fridays: Losing Our Daughter, Finding Our Way. Her touching memoir shared the beauty of Havi’s life and the grief Myra and her husband shared as they navigated the short span of her life. Together with her husband, Dr. Matt Goldstein, Myra has been a vocal proponent of genetic screening and counseling.
“Losing Havi changed everything for our family,” says Myra. “It’s impossible to walk through the world unchanged after losing a child. And so, as part of our transformation, we’re devoted to serving the world with grace, compassion, and courage–the essence of Havi.”
Myra Sack and Matthew Goldstein with their late daughter, Havi
In the fight against genetic disease, awareness is the first step towards prevention. For a genetic disease like Tay-Sachs, the risk is especially high in the Ashkenazi Jewish population. Whereas 1 in 300 people in the general population are carriers of Tay-Sachs, 1 in 30 Ashkenazi Jews are carriers. The numbers are particularly alarming when both parents are carriers: each pregnancy carries a 25% chance that the babies will be born with Tay-Sachs.
To promote awareness of the disease, the US Senate voted in 2008 to designate September National Tay-Sachs Awareness Month. It’s Myra and Shari’s hope that prospective parents will get tested to screen for diseases like Tay-Sachs. That’s why both women have teamed up with Jscreen, a national non-profit public health initiative whose mission is to prevent genetic diseases through the use of comprehensive genetic screening. The company uses at-home saliva test kits to test for over 200 genetic diseases and offers genetic counseling to help couples explore their options for family planning.
“Not a day goes by that I don’t think of Evan and miss him, and I often wonder what our family would be like if he was still alive,” says Shari. “I wanted to find a way to honor Evan and keep his memory alive. I decided to turn our tragedy into something positive so that other families would be spared the suffering we experienced by raising awareness about the importance of genetic testing. The purpose of a carrier screening test coupled with genetic counseling is to identify carrier couples, preferably before pregnancy, and help them understand the impact the disease would have on an affected child, and the reproductive options available to help them plan for the health of their future children.”
Shari Ungerleider with her husband Jeff and their children, holding a photo of their late son, Evan
Genetic diseases are incredibly devastating and all too common, but the work of Myra and Shari is going a long way toward helping families avoid the heartbreak they’ve had to endure. Let Tay-Sachs Awareness Month be a reminder of the gift of genetic screening and the power of parents’ love for their children.
