Rare
Today, February 28th, is the national day to recognize rare diseases. We became a member of this club when we adoped H., and then again when we adopted R. I feel a little like my experience with being the mother to two daughters with a rare disease is quite a bit different from other parents. When your brand new child is 10 or 11 and is diagnosed with a rare disease, you can already see what the functioning looks like. When you have an infant diagnosed with a rare disease, you have no way of knowing how it will play out, especially with the syndrome that H. and R. have, because it is such a wide spectrum of issues. Since I have a lot of new readers, I thought I would take this day to do a little education about Linear Nevus Sebaceous syndrome. (If you've heard this before, feel free to move on.) We've met new people, and with new people reading the blog, they might see pictures of our girls and wonder. I know people are curious, but are often too polite to ask. I don't mi...