On the 7th Day of Rare Christmas Phoebe wants you to know...our New Year's wish is always the same. That we finally get answers. Answers to questions we have been asking for years. What are the names of the diseases Phoebe has? What are the treatment options we could use to help control Phoebe's symptoms? How do these diseases progress? What are the prognoses of these diseases? Are there doctors who specialize in these diseases? What is the genetic component to these diseases? Are my other daughter's carriers of these diseases? Questions that we need answers to. Answers that could not only help Phoebe, but could also help the other individuals facing health challenges like she is. So every New Year's Eve we vow to continue the fight and search for answers. Answers we can give to Phoebe, our family, the medical community, and all the rare undiagnosed families throughout the world.
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.