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.
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