(By Delegate Davis, By Request)

Requesting the Governor to designate the month of October of each year as Rett Syndrome Awareness Month.

Whereas, Rett Syndrome is a devastating condition that affects almost exclusively girls who have developed normally up to 6 to 18 months of age and causes a period of regression, which can be manifested by any number of problems including: Loss of acquired speech, breathing dysfunctions, seizures, muscle rigidity or joint contractures, scoliosis, teeth grinding, growth retardation, decreased body fat and muscle mass, abnormal sleep patterns causing irritability or agitation, chewing or swallowing difficulties, poor circulation in lower extremities, and decreased mobility; and
Whereas, Apraxia (dyspraxia), which is the inability to program the body to perform motor movements, is the most fundamental and severely handicapping aspect of Rett Syndrome and interferes with every movement, including eye gaze and speech, making it difficult if not impossible to accurately access the child's intelligence, and since there is no biological testing that can be used to diagnose Rett Syndrome, it is diagnosed by clinical observation over a period of months or years; and
Whereas, Rett Syndrome is most often misdiagnosed as autism or cerebral palsy causing a harmful delay in receiving the correct medical treatments and educational programs, and the majority of the medical profession has little knowledge of Rett Syndrome and, more often than not, the professionals that are aware of this condition have extremely limited and outdated information leading them to believe that the diagnosed child has no potential for learning or physical growth, causing harmful delays in prescribing the correct medical treatments and therapies; and
Whereas, This same lack of understanding in the educational system causes a great deal of frustration for the parents who have to convince the educators that given the correct teaching methods and time allowed for the child to process incoming stimuli, the child diagnosed with Rett Syndrome is just as likely to increase her learning ability as any other child up to her individual potential; and
Whereas, Due to this lack of knowledge about Rett Syndrome in the medical profession and educational systems, the parents are forced to spend a great deal of time and effort researching treatments, therapies, and instructional methods that may work for their child's specific Rett Syndrome variables, and increasing the awareness and understanding of this severely handicapping condition will help these children receive the correct and early interventions that will allow them to attain their potential; therefore, be it
Resolved by Legislature of West Virginia:
That Governor Cecil H. Underwood is urged to designate the month of October as Rett Syndrome Awareness Month; and, be it
Further Resolved, That the Clerk of the House of Delegates is hereby requested to forward a copy of this resolution to the Governor.