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.

Wednesday, February 23, 2011

Big Response

I feet very grateful for the notes and comments and thumbs-up so many friends left on facebook about my new blog.  Friends- please know that I am grateful you took the time to learn about something so important to me.  I am hoping that awareness will be the first step toward a cure for my baby.
Another bit of the response was that a few other dravet syndrome moms contacted me and now I feel that I am suddenly in a wonderful support group although we live hours apart from each other.  Or like I now have a family who, although we've never met, are tied by our similar life experiences.  I am so grateful for your contact, ladies.  Thank you.  I hope I will be just as supportive to you!


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