Wahine is wise. Life is still worth living and celebrating.

It is true that Huntington's is a terrible disease. A girlfriend of mine adopted a child who started expressing symptoms of the disease when he was in early teens. He died about four or five years later from complications of an operation attempted to help him feed. It was extremely dramatic when the diagnosis came about - after the genetic test - but at the same time it was a relief to know what exactly was happening, and they received great support from the Canadian Huntington Society and social services in general I think. I'm sure your family will find a network of supportive parents to share experiences with, which might be even easier online (since there aren't that many cases).

I am not sure how well proven and documented this is, but it is my understanding that this disease's effects are much worsened by stress. When the stress level increases, the degenerating process goes faster. Life can be kept enjoyable for a longer time if complications and drama can be avoided. In other words, being cheerful and positive (without being silly of course) literally can save your niece's life... for a while at least.

Good luck - I will keep you, your niece and your family in my prayers.