Our daughter, Nadezhda, was diagnosed in May 2010 with Dravet Syndrome at age 3. It is a rare and severe form of epilepsy. This blog is for updates on our lives, our thoughts, and feelings. Everyone needs a voice, and here, ours may be heard.
Also, while epilepsy is often misunderstood, Dravet Syndrome is altogether unheard of. We would like to be informative about Dravet Syndrome and supportive for others dealing with similar circumstances.

Friday, March 25, 2011


Tomorrow, March 26th, is Purple Day!  That is as day for Epilepsy Awareness!  Please wear purple to support my kiddo and MANY, MANY other people throughout the world.
Purple Day was started in 2008 by Cassidy Megan, a young kid with epilepsy.  Her idea was to get people talking about epilepsy so they could become educated about it and to let other people with epilepsy know they are not alone.
I read somewhere that she chose the color purple because lavender represents solitude, and although people with epilepsy often feel alone they really are not!
So obviously tomorrow our family will be wearing purple!  I might have to put Curtis in one of my purple tee-shirts or sweaters, because I am pretty sure he doesn't own anything purple.  (Although I must say here that he does own a full set of pink scrubs that he wears for breast cancer awareness day to support my family - my mom passed away from breast cancer about 20 years ago).  Perhaps we will get some all-purple pics that I can post later!!  So.....  if any of you feel so inclined: wear purple, take a pic, leave me a link to your uploaded pic here, and who ever has the best-most-purpley pic will win a prize!! (probably a hand knitted or crocheted hat of pure awesomeness).  THANK YOU!!

little-purple-dress girl

1 comment:

  1. My girls will have no problem wearing purple tomorrow. It is Eliza's favorite color! Your daughter is SUPER CUTE!! Miss ya!