Hope's Journal

It’s been about a year and a half since my last update. A lot has happened since then, and I apologize for not keeping everyone better informed. It’s very hard to talk about everything in depth – it takes a lot out of us and reminds us of all we are dealing with. You see, as a survival mechanism, we live in a pseudo state of denial. We know exactly what we are dealing with, though we try to not think about it unless forced to. And so we try to go through each day, in sort of a ...

Friends,
It's been a very long time since Rebecca or myself have posted an update regarding Hope's medical condition. I apologize for that. Truthfully, to write about it requires a lot of thought and energy, and frankly it's something I don't like to talk about much.

Many of you may remember that Hope was diagnosed with GAN a long time ago. This was an incorrect diagnosis. Dr. Flannigan out of Utah was able to validate by DNA tests that Hope did not, in fact, have GAN. So, he referred us to Dr. Crawford at Johns Hopkins ...