Jodie and Benjamin Lee's despair has turned to optimism since they
discovered The Children's Center for Communication and Development
at The University of Southern Mississippi.
After the Petal
couple's daughter, Mary Claire, 3, was diagnosed with Rett Syndrome,
a rare neurological disorder, they began searching for answers and
information on Rett Syndrome - anything that could help their daughter.
normally until about (age) 15 months, then she experienced a loss
of words, putting her hands in her mouth, hand wringing - all hallmarks
of Rett Syndrome," said Mary Claire's mother, Jodie Lee. "She
had probably five words that she could say.
it up on the Internet (to examine symptoms) and it was like, 'Oh
my gosh, that's what she's got,'" she said. "It's like
all your dreams for your child are dashed...you feel like there's
Rett Syndrome is a genetic disorder that primarily affects young
girls. Severely impaired expressive language and loss of purposeful
hand skills, along with coordination difficulties, are some of the
key signs of Rett Syndrome. One in 10,000 children is affected.
The Lees eventually
heard of the Southern Miss Children's Center through the Petal Parenting
Center. "We had heard USM had good programs for children with
communication problems. At that time, it was the only ray of hope
has provided services throughout Mississippi for infants, toddlers
and preschool children with communication and developmental disabilities.
More than 50 children receive services from the center each year.
worked on eye gaze, picture identification and on all kinds of early
concepts, such as big, little, colors," said Diana Sawyer,
a speech therapist at the center who has been working with Mary
communication alternatives, since Rett Syndrome has limited her
speech, is one of the primary goals of the staff at the center.
"The greatest challenge is the communication and meeting her
needs in that area," Sawyer said. "We just need to be
patient and give her different venues to communicate."
we're trying to do is expand communication, not just verbally,"
said Margaret Buttross-Brinegar, co-director for the center.
parents can see improvement in her condition since she has been
coming to the center. "She's communicating with her eyes and
expression, a lot better than other kids with Rett Syndrome,"
said Ben Lee.
to the physical, occupational and speech therapy she receives at
the center, Jodie says, just as important is the social interaction
with other children.
one thing is, socially, just being around other kids is huge,"
pediatrician, Dr. Ted Atkinson, said Jodie and Ben's dedication
to finding services and help for their child gives her a fighting
chance. "They're a real advocate for her," Atkinson said.
"They're just on the ball, and are informed about Rett Syndrome,
and they check out the different options (for assistance) available,"
said parents of children who come to the center are traditionally
actively involved in their intervention program
are truly our partners as teachers," Buttross-Brinegar said.
"We have goals for all our children and they're part of that."
For more information
about the Southern Miss Children's Center for Communication and
Development, call (601) 266-5222.