When Bianca Mitchell, a school administrator in Maryland, tells the story of her and her husband, Shon’s, diagnostic odyssey, it’s all too familiar.
For the first couple years after birth, doctors attributed their daughter Lauren’s challenges to hypogenesis of the corpus callosum, or a short brain stem. A genetic test in 2009 was not yet sophisticated enough to identify Kleefstra Syndrome. Then, after three more years of persistence, a second genetic test, when Lauren was 12, finally put a name to her struggles.
Despite the fact Lauren is nonverbal, has mild hearing loss in both ears and struggles with depth perception, she is enrolled in the Kennedy Krieger Institute in Baltimore — one of best schools in country for children with intellectual disabilities — and she is happy.
“She is good at communicating with you,” says Bianca. “She has her own style. She can be very bossy. If she goes to your house, she will go to the pantry and find the oatmeal and she will find a bathroom and she will turn on the bathtub.
“Everybody loves her, I’m only popular because of her. If I don’t bring Lauren with me to church, everybody is like ‘well, where’s Lauren?’”
However, it tears at Bianca’s heart that Lauren does not have any social friends her own age.