So, I've been working on Part Three about my daughter with Netherton Syndrome, but I guess I'm finding it a little hard to write because I feel almost like I am complaining rather than explaining. I think an explanation needs to be preceded with a question, right?
It does prove very therapeutic to write my feelings down, and tell our story. I guess I'm just wondering if anyone is even reading it. I would greatly appreciate some comments with any questions you might have about us. Sure, ask anything... about the disorder, about our family, our life, etc.
-Anna Dawn
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2 comments:
Hi Anna, My name is Valerie and my daughter has been diagnosed with NS aswell. I really enjoy reading your story cause it makes me feel like I am not the only one out there. I do have one question, did Emmalee get genetic testing done? Or did they just test her hair?
Thank you
Val-
Thanks for your comment. It's always comforting to know that there are others out there going through the same thing. Yes, we had the full genetic testing done. It was sooooo frustrating that it took like 4 months! We also had an amnio done while I was pregnant with my son, for genetic testing to see if he would be affected with NS. Do you have a blog or email so we can stay in contact?
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