HOUSE CONCURRENT RESOLUTION NO. 45
(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condition have extremely limited and outdated information leading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.