Rett syndrome

• By ELLYN COUVILLION
• Advocate staff writer
• Published: Nov 4, 2009 - Page: 1D

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Blue-eyed, with a round face and soft blonde hair, 3-year-old Alyssa Chance smiles sweetly at the adults around her, rewarding their attention with an affectionate look in her eyes.

Her small hands clasp and unclasp each other constantly.

Alyssa’s mother, Donna Chance, knows that the time may come when Alyssa may not be able to use her hands and when she may lose the ability to say the few things she says now — “Mama,” “Papa,” “I love Paw Paw.”

The Chance family fights against that day with regular physical, occupational and speech therapy for Alyssa.

Alyssa has Rett syndrome, a devastating neurological developmental disorder that occurs almost exclusively in girls, according to the International Rett Syndrome Foundation.

The syndrome, for which there is currently no cure, affects one in every 10,000 to 15,000 live female births.

The infant girls reach developmental milestones until between six to 18 months of age, when they begin to regress, particularly in speech, hand skills and coordination. A hallmark of the syndrome is repetitive hand movements, according to the foundation.

Yet, still, the child’s personality remains.

“There’s something about this syndrome that’s just different. It doesn’t steal their personalities. It just steals their ability to express it,” said Dr. Carolyn Schanen, a physician and researcher at the Alfred duPont Hospital for Children in Wilmington, Del.

Schanen has been researching the syndrome since 1993, when she met her first patient with Rett syndrome, a 7-year-old girl.

“She kept looking at me like she knew a whole lot more about the world than she was able to express,” Schanen said. “We had to be able to do better.”

Schanen, who comes from a family of physicians and nurses, has a close ally in her fight against Rett syndrome —  her sister, Kathryn Kissam, who serves without pay as the chair of the International Rett Syndrome Foundation (IRSF).

In July 2008, Kathryn and her husband, Luke, the parents of three boys, moved from Richmond, Va., to Baton Rouge, where Luke works for Albemarle.