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.

According to Kathy Hunter, founder and president of The International Rett Syndrome Association, Rett syndrome (RS) is a neurological disorder seen almost exclusively in females and found in a variety of racial and ethnic groups worldwide.

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.

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