neurological disorder. or ml-4. it s a rare genetic disorder more common among jews, people of middle eastern descent. eden s development stopped at 18 months. doctors say she ll be blind by age 12 and will probably not live beyond early adulthood. every dream that we had for our daughter was just ended with one phone call. reporter: the golds thought they were thoroughly screened for genetic diseases before they got married. their first child was born healthy. my doctor tested me for a total of eight diseases and randy s doctor tested him for a total of two diseases. neither one of our doctors tested us for ml-4. reporter: the couple didn t want other families to suffer the same fate. they started an online education and screening program for genetic diseases common among them. at-home screening kits are mailed out and a genetic counselor delivers the results over the phone.
it s a rare disorder of eastern or central european jewish descent. eden s development stopped at 18 months. doctors say she ll be blind by age 12 and she won t live beyond early adulthood. there is no treatment or cure. but ml-4 is preventible. so, how did this happen? the goulds knew that one in four are carriers for diseases like ml-4 or canavans or tay-sachs had is why they got screened before they were married or so they thought. my doctor screened me for two diseases and caroline s doctors screened her for those and two others and neither of us was screened for ml-4 and that s what we carried and gave it to our daughter. when both parents are