(NBC NEWS) The family of a little girl born with a genetic disorder is fighting for a new state law in Virginia for the sake of other newborns.
Ruby Kate Leonard was born in Bristol, Tennessee this past summer. Twelve days before Ruby Kate was born, Tennessee started mandating the screening for genetic diseases among newborns.
Her family got a call nine days after she was born from the state of Tennessee saying Ruby Kate had an abnormal reading on a newborn screening for a genetic disorder. It turns out Ruby Kate tested positive for MPS I, known as Hurler Syndrome, a disease that affects the organs and skeletal system. Most symptoms do not even show up until a child is at least 6-months-old.
“If we would have had her in the state of Virginia, she would be at daycare right now with my 3-year-old and we wouldn’t know a difference,” says her father, Elijah Leonard.
Tennessee now mandates tests for 60 conditions in newborns. Virginia only tests for 29 conditions.
Because Ruby Kate’s condition was caught early, the Leonard family was able to get her into treatment, but the family says they have set a goal for the sake of other newborns to push for legislation in Virginia.