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Why did I decide to call this page Amanda's Adventure? Well instead of just focusing on Amanda's disease, I wanted to focus on Amanda's life and we all know that life is an adventure!
Upon Amanda's diagnosis with Sturge-Weber Syndrome I went scurrying to the nearest computer (which happened to be in the PICU at the hospital) to find out more about Sturge-Weber Syndrome (SWS). What I came across was not a whole lot of medical information and even less personal accounts with the illness. From that limited information, I did find some amazing stories. Those stories, which I have read many times since that day have really helped me and my wife get through all this. I decided to write this page for the next parent or family member who is searching the internet for any information, in hopes that Amanda is an inspiration for someone. Perhaps I am getting a little ahead of myself since I mentioned this page is about Amanda's life and not just her illness. Let me start at the beginning.
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