I wanted to let all my friends know that yes I am alive and well. I needed a break from alot of things and I'm sorry I haven't been around.
Those that really know me know that I've been going thru the long and drawn out process of finding out what is wrong with my daughter. After alot of genetic testing she's finally been diagnosed with what is called Rett Syndrome.
What is Rett syndrome?
Rett Syndrome (RS) is a unique neurodevelopmental disorder which begins to show its affects in infancy or early childhood. It is seen almost exclusively in females, although it can occur rarely in boys. It is found in all racial and ethnic groups throughout the world.
What is the outlook for those with Rett syndrome?
Despite the difficulties with symptoms, most individuals with Rett syndrome continue to live well into middle age and beyond. Because the disorder is rare, very little is known about long-term prognosis and life expectancy. While it is estimated that there are many middle-aged women (in their 40s and 50s) with the disorder, not enough women have been studied to make reliable estimates about life expectancy beyond age 40.
I'm still waiting to have it all fully explained to me but that is it in a nutshell. I want to thank all my friends that have been so supportive of me and I'm going to try my best to be back here on a regular basis.
