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, March 09, 2011

Helping Me Deal

I have made a few new friends recently through other Dravet Syndrome blogs.  One such friend told me about a closed group on face book for parents of Dravet Syndrome kids.  I checked it out and to my surprise it had several hundred people in it.  Each parent can ask questions when they have any or vent about difficulties and frustrations that they have.  Then they can give answers or tell of their experiences in response to other parent's questions.  It has been an amazing resource for information as well as a source of comfort, knowing that I can say anything to this group of family who are actually strangers and know that they understand me and want the best for my family and me, which is the exact same way I feel about them.

For your enjoyment, this is us right now:

1 comment:

  1. Cute pictures!! Hope you all are having a great night!