“Let me tell you why this is so important to me. My daughter Debbie was sick from the day she was born and probably never had a good day in her 8 years of life. Linda, more functional, experienced problems every single day and, at age 35, was hospitalized for the last time. What does a mother say when her child asks ‘Mom, am I going to die?’” Lois lost both daughters to Familial Dysautonomia.
“The family dynamic is indescribable. Grandparents feel helpless, and the parents . . . well, the children’s father and I are divorced, not unusual among couples who lose a child.”
Carrier genes pass from one generation to the next. Most of the diseases are devastating and early fatal but, with screening, these diseases can be prevented. Lois’s plea: “Parents, encourage your children to be tested. Grandparents, let your family know they are of Ashkenazi Jewish descent. Congregants, ask your rabbi to host an education session. Friends, talk about Jewish genetic diseases and testing over dinner.”