Monthly Archives: August 2012


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I have a confession. I’ve been advocating and writing about rare disease which makes total sense since Case’s condition is, in fact, what they call ultra rare. But lately, I feel like I’ve been hiding something. Not on purpose, it seemed like it was a temporary thing at first, it […]

I have a confession


It was like that reminder, the one that you stumble upon when you weren’t even looking for it. My friends and I (to say that, it sounds so simple)…. Well, my friends and I the friends that I never knew that I’d have   the friends from far-flung places who […]

Every step of the way


Why? That is a word that is heard often in the world of rare disease. It’s a word that is often heard in life. Why did this happen to my child? Why him? Why our family? Why would a loving God allow something this terrible? God spoke to me through […]

Why? Why my child?