Ashley was diagnosed with Cerebrotendinous Xanthomatosis, see the story leading up to diagnosis here. After a lot of searching on the internet for support groups or just people who know about CTX, I put the right combination of search words to find a yahoo health group formed by an individual who’s wife has CTX. There are 3 members now to give you an idea of the obscurity of this disease. You can find it here.
Posted in Updates.