Mitochondrial disease awareness week
It's that time of year again. While Audrey has had much fewer stays in the hospital, the stays she has had have been serious and life threatening. Overall though, the last few months have been better. While I was hoping it was that her mitochondrial disease had finally stabilized, the events of the past couple weeks without her feeding tube and medications, have shown me we have just gotten really good at managing her.
So today is 99 days out of the hospital. It is the start of mitochondrial disease week. With these two facts, we are going to celebrate and hope that the words "mitochondrial disease' will reach more people than ever, someone who will find a treatment for my little girl.
