Hi All -

I've been here quite a while reading & learning. It looks like the
final step of discovery will be taken soon & my (step)great niece
will be tested for JH. We're 90+ percent sure already because of
clinicals & because her biological father & both half-sisters have
positive diagnoses of Juvenile Huntingtons. Our Katie's first
symptoms appeared when she was 3 & she's 11 now. Her sisters are
teens & are both having rapid progression. Their repeaters are in
the 70's & they had later onset of symptoms than Katie.

Do higher repeaters go hand-in-hand with earlier onset? Is there a
source that breaks down repeater numbers & severity in plain
English? Is the outlook as grim as most of the literature states,
given her very young age at onset of symptoms? Are any of the
clinical trials open to minors at this point?

I appreciate any help you can give me. My nephew & his wife tend to
ask me to help them understand anything medical related because of my
educational background, even the handouts etc they get from the JH
support group. I admit to being very careful & getting as much info
as possible before I say anything because my own impulse is often to
curl in a ball & cry because our sweet little girl doesn't seem to
have a chance. Yes, her brain works differently & her gross motor
skills are behind & she's tiny & she is very behind her age group
socially (to the point that people get upset when they realize my
daughter is only 6 months older)...BUT she is loving & sweet & giving
& has beautiful manners & handwriting. And she is ours.

So, any answers you can give me or point me in the direction of I
will value tremendously.

Thank you -
Jacquie