Michele sent this to me last week. She is one of the eSpecially Parents writers and you can catch up on her story here.
Check this out... It's about extremely rare disease research at NIH. It was aired last night on 60 Minutes. It was so strange seeing Ethan's doctors and the hospital we go to on TV!!!
This is basically a lot of what we go through... The teenage boy has an inflammatory disease similar to Ethan.
* When I posted this a few minutes ago, I had not seen this clip. Just watched it and learned a lot about how NIH works, the people involved and the resources available. It was worth the 12 minutes.