I understand where you are coming from,used to refer to it as my dammed if I do and dammed if I don't periods. My daughter had some life threating medical conditions (not HD related)during her life, Mothers are fast learners when it comes to our children, we become nurses and learn care taking procedures that should stay in the hospitals,

I understand that feeling when the doctor is telling me that my child will not live much longer.your world is crumbling away and you are expected to make good decisions ya right.....The only thing to do is to get all of the information that you can find at that time and just go with your gut.Through my many years that I've spent at the children's hospital I have learned that there are good doctors and bad doctors it's the same with parents.

I used to demand a round table meeting of all the different departments to sit down and talk to each each other and me, this worked well for us and helped us to make informed decisions.

It's is great to see your concern and love for your aunt and cousin,
just being there is a help to her.

Hi gct & plej.
I was begining to think that maybe not so many mums felt the way that I have/do & that maybe I was being presumptuous. I'm relived i'm not alone.
I am sorry for what you are going through with your children.
Best wishes
Myrna

A lot of good advice has been given Rose. I'm not a 'professional', just an age-worn HD warrior of sorts. I lost my only child, Kelly, to juvenile HD when she was 30 in 1998. I've been 'living' with HD since 1983, when she was first diagnosed. Since 2000 I've had the honor as working as one of the two adult advisors to the HDSA National Youth Alliance which means I support young people ages 9 through 29 living with HD. Some have the disease, many are at-risk, some have tested negative [EUREKA] and others are friends or family members of someone with HD. Believe me, I've heard a lot of heartfelt stories from these young people over the past 7 years!

I'm sure your Aunt is doing the best she can, especially when trying to be the full-time caregiver to her husband. Your niece has to know something is wrong with her Dad, and I wonder what has been explained to her?

I'm going to add my two cents from a different prospective, that of the child. Even at the tender age of 7, your little cousin knows she is not "normal" and heaven only knows what a barrage of questions she probably has asked herself on "why" she is "different" then other kids her age. At 7, she may even be blaming herself for whatever reasons, especially if the "adults" in her life aren't able to explain her illness to her. So many children with JHD have expressed that they felt like they were going nuts or felt like there was something really bad wrong with them that no one wanted to talk about. Many, once they were diagnosed with JHD, felt relieved to finally be able to tell people what "they have", even if they don't fully understand what it is. Maybe, explaining this to your Aunt, might make her consider what her daughter is feeling or thinking and asking herself what she can do to help her?

There ARE some excellent resources on JHD that would not only help her aunt, but your niece as well. If your niece will be attending school this fall the HDSA has a JHD Best Practices brochure and CD to help the child in school. The HDSA Family Guide Series on JHD is also a good, shorter, reference on HD which can be downloaded [in PDF format] here: [www.hdsa.org]

Resources I have on JHD can be found here:
[huntingtondisease.tripod.com]

Resources I have on talking to children of any age about HD can be found here:
[huntingtondisease.tripod.com]

You're an angel Rose, for trying to help both your aunt and your niece!

God bless and {{{{HUGS}}}}
Love
Jean

PS - You didn't say where your niece lives? Below are some link that might help you find support near them.

HDSA Centers of Excellence by State:
[www.hdsa.org]

HDSA Chapters by State:
[www.hdsa.org]