Karen Weber devoted 21 years to caring for her son Jacob, who suffered from the extremely rare familial dysautonomia, a genetic disease affecting Ashkenazi Jews. Now she wants to raise awareness of the condition and encourage couples to test for FD as they would for Tay-Sachs.
A year ago, both she and her son caught swine flu and he was in intensive care for months. "His body just couldn't cope," Ms Weber recalls. "He slowly went down and he died in my arms, with me talking to him and holding him until the very end."