Hi Becky! This list seems really inactive with the
exception of spam. My daughter, Addison, is 8 months
old and has an unbalanced translocation between 9q32
and 16q24. There are a few sites for trisomy 9, but
almost all of them have kids with T9p, which can have
very different complications from T9q which appears to
be much more rare. We were told that there are only 20
cases in the world that are even remotely similar to
Addison's trisomy and they couldn't really give us any
idea how affected she will be. Here are a few links:
http://www.thefetus.net/page.php?id=917

http://www.trisomy9.com/index.php?option=com_frontpage&Itemid=1

http://www.trisomy9.org/

On the last one, if you click on Support at the top,
then 9TIPS, you can subscribe to a message board
that's a lot more active than this one.

How are you doing with your daughter's diagnosis? If
you'd like to correspond privately, I'm definitely
open to "talking" with you. It's an interesting
journey and no one who's not on it will ever really
understand what you're going through.

Debbie--mom to Noah (2.5) and Addison (8 months)


--- jinxgrd <jinxgrd@...> wrote:

> --- In trisomy_9q@yahoogroups.com, "becksmail306"
> <becksmail306@...>
> wrote:
> >
> > Hi, I just joined the group. It appears that this
> group is
> inactive.
> > My daughter was recently diagnosed with a 9q34
> duplication. She is
> 2.
> > I was wondering if anyone else was out there with
> the same
> chromosomal
> > abnormality or any info for me? thanks
> >
> > Becky
>
>
>
> >
> Hi Becky,
> My name is Christy. My son who is 11 yrs. old was
> diagnosed with
> partial trisomy q28;q34.3. I also have the same
> duplication. I have
> not recieved any info from this group on Trisomy 9
> but I have gotten
> some strange e-mails from here so I do not know much
> about this group
> myself.
> My son also has been diagnosed with Asperger's
> Syndrome. We have been
> told that the chromosome defect that we have is very
> rare and you
> really can't find information on it. I have had 6
> family members
> tested and he and I are the only ones that have it.
> My husband and I
> joined a support group in the United Kingdom because
> we haven't found
> one in the U.S. They can't find anyone with the
> same defect that we
> have either. If you have any questions send me an
> e-mail I will try
> to help if I can.
>
> Christy
> jinxgrd@...
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>


Debbie Smith
debbiesmith2@...
http://www.dropshots.com/debbie61497



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