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Rett Syndrome
Understanding the Disease By C.J. Johnson
This year approximately one out of 10,000 baby girls will be born with Rett syndrome. Her birth will be like any other, and she will appear 
healthy in all ways. She will coo, smile and make her parents unbelievably happy. But within six to 18 months of her birth, symptoms of Rett syndrome will present themselves, and she will endure countless hardships, and her parents will face boundless challenges.
The child with RS usually shows an early period of apparently normal development until 6 to 18 months of life. From that point on, the child gradually loses communication skills and purposeful use of the hands. Stereotyped hand movements, gait disturbances and slowing of the rate of head growth become apparent. Other problems may include seizures and disorganized breathing patterns that occur when awake.
This syndrome is often misdiagnosed as autism, cerebral palsy or non-specific developmental delay. In the case of Connie Coughlin of Bartlett, Tenn., her daughter, Dani, was diagnosed with cerebral palsy. The family believed that for 11 years until she was officially diagnosed with RS.
"By the time Dani was correctly diagnosed, she had lost all of her abilities, and the first thing I read about Rett was that many girls die from it," Coughlin says. "Dani was always very fragile, low weight, petite, and her scoliosis was progressing too fast for surgery. I knew she didn't have long to live."
Parents who have children with RS learn to face unusual struggles. "Families are challenged by the amount of physical care required by the child with RS who needs help for every aspect of daily living," Hunter says. "Most individuals with RS can't talk, but some can use communication devices." Hunter explains that only half of the people with RS will be able to walk in their lifetime.