A visit is worth a thousand words

I talked with someone from NIH today and things are changing a little. We need to go out for an initial evaluation (once they get all her tests results there). Basically they want to see her, meet her and assess the situation for themselves. They have never had such a young patient in their study, only a study in France has had a 2 year old. When we go for the first time (for a much shorter visit of 2-3 days) they will be able to determine if Emily is eligible for the study. It sounds like this was our way to get in the door, but not necessarily start the drug right now ( though possibly in a few years). The good news is it will still be a team of doctors that will follow Emily, but I would like to get started on this drug before we have more problems. I don't have any dates yet, they have to coordinate when all the doctors will be there and get back to me. So that is what I know...