The Gift of My Sister

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My thoughts on the wonerful things that my beautiful sister has in store for her. She was born with Rett syndrome and is unable to walk or speak. She will be 21 this year, she is my silent angel.

About Rett Syndrome
Rett Syndrome (RS) is a neurodevelopmental disorder believed to affect 1 in 10,000 female births (rarely seen in males). It is named for Dr. Andreas Rett, an Austrian physician who identified the syndrome in 1966, although it remained unknown in the United States until 1983. Symptoms: Children with Rett Syndrome appear to develop normally until 6 to 18 months of age. They then enter a period of regression, losing speech and hand skills they had acquired. Most children develop seizures, repetitive hand movements, irregular breathing and motor-control problems. * A slowing of the rate of head growth also becomes apparent. Most researchers agree that RS is a developmental disorder rather than a progressive, degenerative disorder. The girls can live to adulthood, but most never regain the ability to use their hands or to speak.


Cause:
In 1999, a research team led by Dr. Huda Y. Zoghbi of the Howard Hughes Medical Institute and Houston’s Baylor College of Medicine identified the cause of Rett Syndrome as a defect in the MECP2 gene on the X chromosome. RS is most often misdiagnosed as autism, cerebral palsy or non-specific developmental delay. Genetic testing is now available to confirm the diagnosis.
*Not every child with RS displays all of the symptoms, and individual symptoms may vary in severity.

To learn more visit www.rettangels.org
My Dad runs it for the Rett girls.