I started this website in 1997, long before the days of blogs, Twitter, Facebook, Google, or even before most people were using the internet. My reason for starting the site back then was to get information online about mitochondrial diseases, as so little was no known about them. My son was the first child diagnosed in the entire metro area where we lived at the time, and he was only diagnosed because of my relentless use of what was available on the internet at that time. The 'net can be a great resource for parents; it can also be a place full of fear. Be careful if you online looking for medical information. Unless you feel you are pretty competent, steer away from personal sites such as this one. Most parents do NOT know what they are talking about, and you are much better off at well known, hospital linked sites.
That said, not every parent is an idiot, and not every doctor is competent. So, to the rest of you, good luck in your quests. Every parent is in the position to be the best advocate for their child. The information I share about my own children is meant to offer encouragement. The other information I post, such as my personal opinions on politics, is simply correct :D