MIDDLEBURG --Kailey Jo Weaver of Middleburg is smaller than the average 6-year-old. She smiles and laughs but doesn't speak or communicate like the average child. Diagnosed at 22 months of age, Kailey has Rett Syndrome, a unique developmental disorder that is usually first recognized in infancy and is predominantly found in girls but can rarely be seen in boys. The disorder has been most often misdiagnosed as autism, cerebral palsy, or non-specific developmental delay.

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ROAD TOUR DETAILS CLARIFIED

A motorcycle and car road tour to raise money to support the International Rett Syndrome Foundation will be held Sunday starting at the Kreamer Recreational Field, behind Wood-Mode in Kreamer. The tour has been organized by family and friends of Kailey Jo Weaver, 6, of Middleburg, who has been diagnosed with the developmental disorder. Her story was featured in the Tuesday Pulse section. Riders may register between 11 a.m. and 12:15 p.m., with the ride beginning at 12:30. Donation to ride is $15 per rider and $5 for passengers. Snacks will be served before the ride, and a meal will be served following it. A Chinese auction of items donated by local vendors will be held after the ride. For information, call 374-6415.

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The disorder is caused by mutations on the X chromosome on a gene called MECP2 and strikes all racial and ethnic groups and occurs worldwide in 1 of every 10,000 to 23,000 female births.

In most cases, children with Rett's develop normally to about six to 18 months of life and then a slowing or stagnation of development skills occurs. This is because Rett's causes problems in brain function that are responsible for cognitive, sensory, emotional, motor, and autonomic function.

In Kailey's case, this affects her ability to learn, speak, move, breathe, and swallow. One of the most severe and devastating handicaps associated with Rett Syndrome is apraxia, where the will to move is present, but the ability to carry through is not.

When Kailey first started showing signs that she was developmentally behind, doctors had a hard time diagnosing what was wrong, which is often the case with Rett Syndrome, and the main reason more awareness about the disorder is needed.

Kailey wrings her hands and grinds her teeth and has some troubles holding her own body weight, some of the movements that indicate to strangers that she has the disorder. She can't walk on her own but is fascinated by movement, color and music. She has attended a regular preschool that has services for physical, occupational and speech therapies.

In the fall she will attend kindergarten at Kelly Elementary in Lewisburg where they are equipped to handle students with multiple disabilities along with non-disabled students. Kailey has tried horseback riding therapy and physical therapy to help her to keep the skills she has already developed.

The International Rett Syndrome Foundation continues medical research in the hopes of finding a cure through funding of research collaboration, education, public awareness, and other services. If a cure for the syndrome is found, it may also help reverse other disorders such as autism, Alzheimer's disease, bipolar disorder, and schizophrenia which are all found along the same gene. In February of 2007, a major research breakthrough was found when there was a reversal of symptoms in mouse models, even those close to death.

To support these efforts, Kailey Jo's friends and family have organized a motorcycle and car road tour to raise funds to support the IRSF. Last year, more than 82 bikes and cars participated raising more than $3,000 for the IRSF. The road tour is open to all motorcycle and car enthusiasts who enjoy a leisurely Sunday ride while helping a good cause.