What does it mean to lose one child, then two?
Such unfathomable loss spurred one Jewish mother to action.
"What could be worse than having a sickly child, caring for that child, and watching that child die? And knowing you could have prevented it?"
Lois Victor, who lost two children to familial disautonomia, one of a group of Jewish genetic diseases, has become a fierce advocate for the testing now available to prevent giving birth to a child with one of the dreaded diseases. She is the founder of the three Victor Centers, one in Philadelphia, one in Boston and a third just opened in Miami, that are dedicated to promoting education, awareness and affordable, accessible testing for individuals of childbearing age.
Such testing did not exist when Victor became pregnant with her first daughter, born in 1960, nor her second in 1963. Her oldest daughter, who did not develop properly from birth, lived for eight years; her second, lived to the age of 35, despite extensive health problems. Though the family lived in Boston with access to exceptional medical resources, doctors then knew little about the disease, its diagnosis, treatment or prevention.
Now genetic testing is readily available for familial disautonomia and other genetically transmitted diseases common among Jews of Ashkenazic descent. Since the founding of the first Victor center in 2002, Victor has funneled her personal resources, time and energies into making a genetic disease-free future a reality.
"There is no reason for anybody to have children born in this day and age with any of these diseases," says Victor with the steely determination of a woman who has known inestimable loss. "It is all so totally preventable."
A simple blood test can tell individuals if they are carriers of the autosomal recessive genes: if both parents carry the gene for one of the diseases, there is a 25 percent risk with each pregnancy that they will have a child with the condition; if only one parent carries the gene, there is a 50 percent risk that the child will be a carrier. The Victor centers, each associated with a major medical center, promote awareness and provide testing. Genetic counseling is an integral part of the programming, providing those individuals and couples tested with information about reproductive options, including, stresses Victor, the possibility of having healthy children.
Victor says the centers are aiming to establish "the gold standard for uniformity, affordability and sustainability" of testing.
Victor will be the keynote speaker at a Feb. 20 educational event sponsored by the local Jewish Genetic Diseases Center, which shares Victor's mission of preventing the incidence of Jewish genetic disease. The center, founded in 2004, with a coalition of communal partners, is offering subsidized testing to the community for the fourth year on Sunday, March 30, at the Ina Levine Jewish Community Campus. Register for testing online at jewishgeneticsphx.org.
Victor is particularly proud of a screening at this year's United Jewish Communities General Assembly in Nashville that tested hundreds of individuals and helped to bring attention to the issue. The assembly passed a resolution citing the Victor centers for their work and supporting the cause of awareness and education about Jewish genetic diseases.
Victor, tireless in her efforts, says it is critical to reach out not only to individuals, but to rabbis and physicians to provide information and encourage genetic testing.
She would like rabbis to require couples to undergo testing before they marry and even suggests that prospective brides and grooms put testing on their wedding gift wish lists.
As they start out making a new life together, "What better thing can they do than to ensure that they will have healthy children?" she asks.
Details
- What: "It's in the Genes!" What you should know about Tay-Sachs and other Jewish Genetic Diseases
- Who: Jewish Genetic Diseases Center of Greater Phoenix, with Hadassah Valley of the Sun Chapter and the Valley of the Sun Jewish Community Center
- When: 7 p.m. Wednesday, Feb. 20
- Where: Ina Levine Jewish Community Campus, 12701 N. Scottsdale Road, Scottsdale
- Cost: Free
- Call: 480-668-3347
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