Event puts spotlight on rare health disorder
By Mary Cypress Howell Special to The
She is living her life to the fullest, even though she can’t walk or talk.
Twelve-year-old Breanna Leatherwood of
Rett syndrome is not curable. Breanna could live into her late 50s, as expected of most Rett syndrome patients, but she will require constant attention for the rest of her life. So in 2007, her godmother, Marilyn Archibald, helped start the Southeastern Rett Syndrome Alliance, which provides support for the girls and families affected by the disorder.
“We want to provide local support and awareness,” said Archibald, who is president of the alliance. “So often, parents feel like they’re in a cocoon taking care of a Rett syndrome child. It is a full-time job.”
The alliance will host a walk and run Saturday at
Members of the Tuscaloosa City Council, Tuscaloosa Police Chief Steven Anderson and other local officials have been invited to the event. Professional boxer Deontay Wilder, a
Percy said Rett syndrome children lose some use of their hands and appear to be autistic. The signature sign of Rett syndrome is unusual hand movements that go on continuously while awake, preventing girls from doing anything else with their hands. “The majority learn to walk,” Percy said. “Though it is in an unusual, unbalanced way without a purpose. Very few would be able to open a door.”
The disorder affects nearly one in 10,000 females of all ethnic groups worldwide. And though the syndrome is not curable, treatment can be sought to manage symptoms, Archibald said.
The alliance works closely with Percy, who is the clinical director of the
Although the alliance’s main source of money comes from national grants and the
Along with the run this weekend, the alliance holds an annual conference for families, teachers, nurses and others affected by Rett syndrome. Speakers address the group, which consists of people from all over the Southeast and around the country. This year’s conference will be in August.