Jewish Genetic Disease?
One in five Ashkenazi Jews in the U.S. are carriers for a genetic disease.
While little Eden’s parents went through the motions of testing for such diseases, what happened next was tragic. Their second child, first daughter, Eden, was diagnosed with a rare, genetic disease called Mucolipidosis Type IV, or ML4.
Caroline and Randy Gold have three children, 18-month old Shai, a seven-year-old Natanel, and five-year-old Eden.
Eden cannot walk, talk, feed herself, or sit up on her own as a result of ML4. Doctors say she will be blind by age 12, and Eden will not live longer than early adulthood.
The worst blow to the parents, though, is that ML4 is preventable.
While they had thought they went through proper testing prior to marriage, at it turns out, Caroline’s testing only looked at half of the Jewish genetic diseases, while Randy’s looked at 1/8th-- two.
Eden’s parents created a comprehensive education program to teach doctors, rabbis, and young couples about the risks of these diseases, which inspired JScreen.org, national screening program for the 19 most common genetic diseases, which launched last month.
Will you inform your Jewish friends of this new way to test for diseases?