The reason I am writing today is because I have been researching my daughter's disease more fervently lately. I am learning a fair amount through medical and organization's sites. It seems to me that in the last several months there is more info available. I wonder if more research is being done!? That is a wonderful thought! Or possibly Dravet's is becoming more well-known. It is SO rare (like 1 in 40,000). I am assuming that as people become educated about Dravet's we will realize how little info and research there actually is about this disease and that so much can be done to find out! There is currently no "cure" and most medications aren't too helpful. So I'd say there really is a lot to be done about this disease.
Also in my researching (which is just me googling Dravet Syndrome over and over reading everything there is on the web about it) I have come across several blogs kept by parents of Dravet kids. I read post after post about these families going through situations that feel all to similar to mine.
Although the posts often scare me because so many families have it worse than we do, I also feel a sense of belonging, community, and support. Their blogs are also informative and provide that needed awareness about Dravet's and what Dravet kids and families deal with. They also provide links to other sites that have info and, as one blog author put it, "provide a safe place to communicate and discuss our experiences with Dravet's". Ok maybe that wasn't it word for word but I can't remember exactly.
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On my blog, I would like to tell Nadezhda's story from the beginning. I have written anything I consider noteworthy from my pregnancy onward. You can look for most of these details in the "pages", found just under our title but above posts (it's how you got here). Also, on an old blog, I wrote about our experiences with some of her first seizures in greater detail. I will include these old posts to help paint the picture of where we are today. These will also be included in the "pages". And on our regular posts I will write about our current situation, my thoughts, our experiences, and who-knows-what else!
So, now, here I am! I'm ready to try being supported, giving support, and educating the world about Dravet Syndrome. Well, I will at least provide some links on my page to the informative sites anyway. Let's find these kids a CURE! please!
And I must say there IS another reason I need this blog... I NEED my relationships with friends and family to be positive, happy, and fun. I will write thoughts and feelings on this blog and get them off my chest so no one ever has to read this but at least I will feel that I have said what I need to say. Then when I am with friends and family, I can be me again: a happy, fun, loving girl, wife, and mom; rather than a worried-out ol care-giver.
And I must say there IS another reason I need this blog... I NEED my relationships with friends and family to be positive, happy, and fun. I will write thoughts and feelings on this blog and get them off my chest so no one ever has to read this but at least I will feel that I have said what I need to say. Then when I am with friends and family, I can be me again: a happy, fun, loving girl, wife, and mom; rather than a worried-out ol care-giver.
