Huntingtons disease?

[Wahine]

Brandi, I want you to understand that I feel very badly for you and your family, especially your niece. This is going to be a huge trial. I hae seen what Huntington's and chronic diseases can do first hand. I have to say that Huntington's is probably one of the worst, if not the worst.

But I adamantly believe that you must laugh and enjoy the time that you have. None of us knows what could happen tomorrow and what a waste it would be to feel guilty for being happy during the good times. It's natural the feel the way you do, but I hope that you can change that. Guilt is not healthy. Take care. Love each other and laugh. Things will get worse, unfortunately. Enjoy the time you have.

[Grog]

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.

[RoadRaven]

Take care. Love each other and laugh. Things will get worse, unfortunately. Enjoy the time you have.

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

^^^^ what they said....

More aroha coming your way...

[Bikingmomof3]

Brandi,
My thoughts and prayaers are with your niece, her family, and you.

[Duck on Wheels]

Oh my! What a sad and tough thing to have to deal with at such a young age. And it may well explain why her birth parents were unable to care for her from the get go, if one or the other or both was dealing with (possibly not yet diagnosed) Huntington's. I hope your in-laws have the strength to deal with all that now will ensue with some form of humor, however dark that humor may be. Maybe the only way to make it through will be to laugh at it, some way or another. Their plan of travelling seems like a good start, packing in a lifetime of adventures in what time your niece has left to enjoy them. Sounds like they have the strength and wisdom to deal with this better than most and that your niece was lucky to find them.
Hugs and well wishes from afar!

[mimitabby]

yeah, Duck, that's what i was thinking too.

[Brandi]

We talked with my sister inlaw at length yesterday. We got a lot of insite on what they plan to do and what not. They are slowly coming to terms with it. They are going to try and help her stay strong and maybe that will help lessen the effects.
They had a big birthday party on sunday for my Nieces birth mom who has come to help and support her. Which for my sister in law you would think it would be tough but it has helped her because they have become friends.
But I guess the party was a huge blast and everyone just had a good time. My mother in law said it was a lot of fun and she really enjoyed meeting our nieces birth mom.
We have a big project in the town they live in this summer so we plan to hopefully see them a lot the time we are there.
Thank you again for letting me get this out here. It has hepled me a lot. And the kind words and thoughts from all of you mean so much. I hope no one here has to ever go through something like this it is just to tough let me tell you.
Bless all of you for being here!