RETT SYNDROME… AND A CROSS FULL OF ROSES...
Xiomara J. Pagés
I have a 22 year old daughter born with an strange disorder called RETT Syndrome. She was not diagnosed until she was six years of age.
This is a neurological disease, which affects mostly girls (200 thousand cases approximately in the world).
They are born apparently "normal" but the onset of the disease takes place around one year of age. There is a period of auto-destruction or autism between the age of two to seven. They are profoundly mentally retarded and multi-handicapped, but their true intelligence is difficult to measure, due to their expressive eyes that seem to communicate more than what the doctors may believe. They suffer scoliosis or curves in the backbone.....deformations in legs and feet and a typical hand-wringing or washing movement. They suffer epileptic seizures, muscular spasms, respiratory, digestive and urinary complications. Life expectancy is unknown, although many of them die during childhood or adolescence.
Their skin appearance is like wax, so RETT is called the syndrome of the "wax dolls."
The American actress Julia Roberts requested recently from the United States Congress more than 15 million dollars for RETT Syndrome research.
During my work as a writer and motivational speaker, I published my first book dedicated to Sandra, my sick child with RETT Syndrome. The title, "My Cross Full of Roses" (in Spanish) explains that although she is a cross to bear, an anchor, she is an angel and my wings as well.
This book of letters to and from Sandra during her first fifteen years of life may be purchased at:
Ediciones Universal
Tel. (305) 642-3234
or any bookstore in Miami,
Internet: amazon.com/half.com
(Refer to Information on Books)
Send Check or Money Order to: |
P.O.Box 83-1687
Miami, FL
33283-1687
USA |
Email:
PortaCu@aol.com
Tel: (305) 596-9164 |
