GIVERS AMONG US
Delray woman putting genetic diseases to the test
A South Florida mom is passionate in her mission to eradicate Jewish genetic diseases like the kind that took the lives of her daughters.
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BY NATALIE MCNEAL
nmcneal@gmail.com
Lois Victor's only children, Debbie and Linda, died at ages 8 and 35, respectively. The cause? A debilitating genetic disorder that is found in Ashkenazi Jews.
Determined to stop other families from birthing children with genetic disorders that can be detected with simple testing, Victor donated the seed money to open The Victor Center for Jewish Genetic Diseases at the University of Miami's Miller School of Medicine. The center, one of three around the country created with Victor's assistance, does preconception genetic testing for nine disorders prominent in Ashkenazi Jews. It targets college students.
''I am looking for a way to spare others the pain that my family and I went through for years,'' said Victor, a retired interior designer who used to run a national lighting business and now lives in Delray Beach. ``With one simple blood test, your life can be changed.''
Ashkenazi Jews like Victor have ancestry from Central and Eastern Europe. Since these Jewish communities in Europe were isolated, they had children with one another and gene mutations became prevalent.
It's estimated that one in five Ashkenazi Jews is a carrier of a mutation in at least one of the disease genes. The Victor Center gets funding of $200,000 per year to test 250 Jews for the genes for the disorders. The carriers of these disorders may have normal lives, so they don't know they are a carrier of the disease until they give birth to a child with the condition. If both parents are carriers of the gene for the same condition, there is 25 percent chance with each pregnancy of having an affected child. There is no cure.
Since the 1970s, doctors have screened for Tay-Sachs disease, which causes progressive degeneration and destruction of the central nervous system. Babies born with Tay-Sachs appear normal at birth, then begin to lose their hearing, sight and swallowing skills. They rarely live past age 4.
Since genetic testing for Tay-Sachs became available, the disease has gone down 90 percent, said Deborah Barbouth, assistant professor of pediatrics at UM's medical school.
''Some couples decide not to get married, others decide to use sperm or egg donors, other decide to adopt,'' Barbouth said.
Victor and her ex-husband both had the genes for Familial Dysautonomia, which causes nervous system failure. Her daughters suffered physical ailments, such as trouble walking, pneumonia, fevers and shorter life expectancy. When they were born decades ago, there were no screening tests. ''You watch your children suffer, and whether they die at 4 years old or at 34 years old, it's a bad thing,'' Victor said.
Victor launched the first testing center at the Albert Einstein Medical Center in Philadelphia in 2002. She raised her two daughters in Pennsylvania. Because she grew up in Boston, she launched the second center in Boston at the Floating Hospital for Children at Tufts Medical Center.
Victor regularly travels the country speaking to college and synagogue groups trying to encourage testing. She wants more health insurance companies to cover the costs of the screening. She would like for rabbis to require the screening before marrying a couple. She considers herself more activist than philanthropist.
''I want every Jew of child-bearing age tested,'' Victor said.
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