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Brandi
04-25-2007, 08:54 AM
My 18 year old niece just got diagnosed with this. She was falling for no reason. They have been testing her which seems like for months now.
This is awful for my sister in law. She and her dh tried to get pregnant for a long time, then they did and my nephew was born with tourettes.

So they stopped trying to have more kids and adopted my niece when she was a new born in hopes of having a normal child. They are such great parents to both thier kids! It is sad that this has happend. Does anyone know or have this that they can give me a little insite?

I have looked up stuff on line. She has probably had this for years and we chaulked it up to her being a teenager. I feel so bad for my sister in law and her dh. they have already had it so hard for so many years with my nephew. please send good thoughts their way they could really use it!

VeloVT
04-25-2007, 12:57 PM
Am I thinking of the right disease -- is Huntington's a hereditary degenerative nervous system disease, symptoms don't usually start until the patient is middle aged but then deterioration is rapid? If this is the right illness -- there was a long & good feature about it several weeks ago in the NY Times, following the story of a young woman (about your niece's age actually) who was at risk for developing the illness due to family history, and elected to have genetic testing to determine if she had it. Turns out she did (or will), and she is now working hard to raise the visibility of the illness, and advocating on behalf of those diagnosed with it. You might try searching for the story on the Times' website...

Good luck to all of you. I'm sure this is a very emotional time.

mimitabby
04-25-2007, 01:06 PM
Huntington's Chorea? Yeah, that's bad and hereditary. I have never heard of people that young with symptoms. I am sorry to hear it.

Brandi
04-26-2007, 07:57 AM
Yea my neice has the juvenile form of it. And it is genetic.
I will go look up and see if I can fing the story, thank you for letting me know. It is very rare what she has at least for her age it is. Thank you for the warm wishes as well.

Wahine
04-26-2007, 08:04 AM
Sending out good thoughts. Huntingtons is a terrible disease.

Brandi
04-26-2007, 09:06 AM
Liza,
I just read the NY times article. Wow! I am beside myself for my niece right now. She is so young to have this. This is not going to be good or easy. Now that I realize all she will not be able to have or do. They say when it comes on young like this it is just a mtter of time. and there is not a lot of medicine to help it either. She can't have kids or might not even get married. Who wants to marry someone who is going to go insane basically. I am sad! My poor in-laws!
But thank you for telling me about the article it has made me more aware. I feel I should look into fund raising and what not to see if I can do anything.

Ninabike
04-26-2007, 09:34 AM
Brandi, My thoughts and prayers are with your neice and her family.

snapdragen
04-26-2007, 10:28 AM
Huntington's is a terrible disease, I'm sorry your niece has bin hit with this at such an early age.

A good friend of mine rode RAAM last year, he and his team raised funds for Huntingtons, they're doing it again this year. (Team 2 Cure Huntingtons Disease , if anyone is interested) His wife is at risk, another team member also has family at risk.

RoadRaven
04-26-2007, 11:13 AM
What a tradgedy...

I know very little about Huntingtons and had never heard of it until I started looking at the background to rock music and discovered Woody Guthrie (who influenced Bob Dylan, who in turn influenced people like Elvis and The Beatles.....)

Woody was diagnosed with Huntingtons at 40, and his mother had died with it at 41.

Its a tragic illness, and all the more so for the youth of your niece.

The way I look at life, children choose their parents, and although it may be poor consolation, these two found their ways into your sister-in-law's life - albeit by different means. They will have chosen parents who have the potential to cope with this... I wish them strength.

Brandi
04-26-2007, 04:45 PM
I have cried 4 times today! I am so sad for her and my sister in law.Thank you for all your prayers and good wishes. I will let them know they are in many hearts.
And so you all know my brother in law will provide my niece with only the best care so that is a good thing. I am sure there are a lot of people out there who have not had as good. i am starting to rethink how i look at some homeless people and the crazy people you see walking around. What if this is their problem too and there was just no one to help them deal with it or put them in a safe place to be taken care of. You just never know thier stiry do you?

Brandi
04-29-2007, 09:30 PM
They got a 2nd opinion and confirmed the diagnoses. They give her anywhere from 5 to 20 years to live. (sigh) My brother in law has stopped going to work (which he can afford to do) and he is a workaholic to the max. But this happening has made him see things differently which is good. he needs to this. They have tons of trips planned. And my sister in law has become really good friends with my niece's birth mom. The support is amazing. But i still keep crying every time I write about it.
When i catch myself having a good time or laughing, I stop and think it is wrong for me to be doing this right now. Considering what they are going through right now. I don't know........... It is a strange thing.

Wahine
04-29-2007, 10:17 PM
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
04-29-2007, 11:00 PM
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
04-30-2007, 12:06 PM
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
05-01-2007, 07:23 AM
Brandi,
My thoughts and prayaers are with your niece, her family, and you.

Duck on Wheels
05-01-2007, 07:41 AM
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
05-01-2007, 07:43 AM
yeah, Duck, that's what i was thinking too.
:(

Brandi
05-01-2007, 08:00 AM
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!