28 February 2011

rare disease day

I just learned that today is Rare Disease Day, as approved by the 112th Congress of the US. I didn't know it existed until I was notified by the ARPKD/CHF Alliance, a group that supports families dealing with the disease our boys have.

In honor of Rare Disease Day (and the fact that I actually managed to compose one blog post in February), please consider saying a prayer for Joshua, Garty, and their kidneys and livers. Their bodies are functioning quite well compared to many who share their diagnosis, but they have a long road ahead of them on the health front.

More from me in March. I haven't forgotten those of you who check this blog regularly. I've just had to prioritize other things recently.