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Released December 2, 2003

By David Tisdale

HATTIESBURG - 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.

"She developed 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.

"We looked 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 feel like there's no hope."

Specifically, 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 we had."

The center 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.

"We've 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 Claire.

Identifying 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."

"What we're trying to do is expand communication, not just verbally," said Margaret Buttross-Brinegar, co-director for the center.

Mary Claire's 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.

In addition to the physical, occupational and speech therapy she receives at the center, Jodie says, just as important is the social interaction with other children.

"The number one thing is, socially, just being around other kids is huge," Jodie said.

Mary Claire's 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," he said.

Buttross-Brinegar said parents of children who come to the center are traditionally actively involved in their intervention program

"The parents 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.


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April 20, 2004 4:09 PM