Nicole Danielle

This site is dedicated to Nicole Danielle.  She was diagnosed in October '98 with a rare brain disease called Sturge-Weber Syndrome.  Our hope with this site is to share her story and ours with those who may have recently been faced with this diagnosis. 

Please be patient I want to do a journal on this site to share with others what our life with Sturge-Weber Syndrome has been like since October 6, 1998.  This site comes from two parents who only want to help others deal with this disease the best way possible.   

ABOUT STURGE-WEBER SYNDROME - Sturge-Weber Syndrome (encephelotrigeminal angiomatosis) is a congenital, non-familial disorder of unknown incidence and cause. It is characterized by a congenital facial birthmark and neurological abnormalities.  Other symptoms associated with Sturge-Weber can include eye and internal organ irregularities. Each case of Sturge-Weber Syndrome is unique and exhibits the characterizing findings to varying degrees.

Nicole's Diary  (I have updated with a summary of the last few years.   We'll keep it updated now so that others might receive some help or comfort)  Updated 10-3-2006.

Photos

Links:
SWS Support Group of New Zealand
Dennis' Site
 

Last updated 10-3-06

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Please note:  I am not a doctor nor do I have any type of medical background.  I just wanted to share our experiences in an attempt to help others.  Thank you.