Losing a child is an unimaginable tragedy that no parent should have to endure. For Shari Ungerleider and Myra Sack, that tragedy became a reality. Shari lost her son, Evan, 25 years ago to Tay-Sachs disease, while Myra's daughter, Havi, passed away in 2021. Despite the decades that separate their losses, both mothers share a painful bond, and their stories highlight the importance of genetic screening.
Tay-Sachs disease is a rare, inherited genetic disorder that primarily affects infants and young children, leading to progressive neurological damage. Babies born with the disease typically develop normally for the first few months of life, but as Tay-Sachs progresses, it causes devastating effects: blindness, deafness, seizures, and respiratory issues. Sadly, most children with Tay-Sachs die before the age of five.
Both Shari and Myra have turned their grief into action. They have become passionate advocates for genetic screening, working tirelessly to ensure that other families don’t have to endure the same heartache. By partnering with Jscreen, a national non-profit public health initiative, they are helping to raise awareness about the importance of preconception genetic testing. Jscreen offers a simple, accessible solution: a carrier screening test coupled with genetic counseling to help identify carrier couples and then guide them to 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. These tests screen for over 200 genetic conditions, including Tay-Sachs, and are particularly important for those of Ashkenazi Jewish descent, where Tay-Sachs carrier rates are significantly higher than in the general population. For those who test positive as carriers, genetic counseling can help families understand their results and explore their options, including in vitro fertilization with preimplantation genetic testing. This approach offers hope to couples who may be at risk of having a child affected by Tay-Sachs.
For Shari, advocacy is a way to honor her son’s memory and to turn her personal tragedy into something positive. She hopes to spare other families from the suffering her family experienced by encouraging genetic testing. “Not a day goes by that I don’t think of Evan and miss him,” she says. “I often wonder what our family would be like if he was still alive. I decided to turn our tragedy into something positive so that other families would be spared the suffering we experienced.”
Similarly, Myra, who is also certified in Compassionate Bereavement Care, believes deeply in the power of community and compassionate leadership. She now serves on the board of the Courageous Parents Network and founded a non-profit, e-motion inc., to help those who have lost a loved one find a new way of living with grief and loss. “Losing Havi changed everything for our family,” she says. “It’s impossible to walk through the world unchanged after losing a child. We’re devoted to serving the world with grace, compassion, and courage—the essence of Havi.”
Tay-Sachs Awareness Month serves as a reminder of the vital role genetic screening can play in preventing these heartbreaking losses. With advancements in genetic testing, prospective parents can now access information that could help them plan for healthy children and avoid the devastating impact of Tay-Sachs disease.
Shari and Myra’s stories are powerful reminders of the importance of early detection and proactive planning. By raising awareness and advocating for widespread genetic screening, they are ensuring that their children’s legacies continue to save lives.