Insurance is NOT covering the tests that Phoebe needs. It is completely out of pocket. The condition is too rare. They said in order for them to consider paying part of it they require specific things. And the specific things they require are the results of the tests that they are refusing to cover.
The true author of this blog is my daughter Phoebe. This is her life. I am blessed beyond words to be her mommy and to be able to share her story with you.