I feel so sorry for the people who are suffering in such a tragedy right now. There are people suffering everywhere, of course, but this has just added to their suffering by 1 million percent. They are probably scared and uncertain; even cold, hungry, and extremely tired.
What if my family and I lived there right now? Or what if a natural disaster happened here, where we live? How would I feel? Would all 3 of us be alive? What about our friends, family, or our dog?
I started thinking specifically about how we need to have a reserve of our daughter's daily medications and her rescue medications. Hospitals could be destroyed, or medication supplies could run low. Would Nadezhda survive that?
I am not sure how to get a reserve of meds saved up. We are not allowed to get them from the pharmacy very early so we could only save a couple pills each month. Does anyone know a way to get a few-month-supply of medications? That would provide a lot of comfort for us!
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.