[tri-med] Re: Unique Newsletter

I understand completely what you mean.  We will probably never find anyone 
close to what Candace has - so we are in the dark all the way.  But I would 
not trade her for anything in the world.  Bev has been very kind to me - she 
is a wonderful person, and has tried to find someone with something close to 
Candace.  Unfortunately it didn't happen.  But it is nice to get the 
newsletter and hear so many positive stories.  I try to pass on the info on 
Unique as well.  Glad you joined.

Kim Ihlenfeldt, husband Kerry (complex balanced translocation 9, 15, and 18 
chromosomes), son Cameron 8 (same genetics as Dad), Cayden T-18 (12-16-02 to 
01-16-03), and Candace 1 (Partial Trisomy 18 and Partial Trisomy 15)



>From: Katy Roberts <basil1_2000@xxxxxxxxxxx>
>Reply-To: tri-med@xxxxxxxxxxxxx
>To: tri-med@xxxxxxxxxxxxx
>Subject: [tri-med] Re: Unique Newsletter
>Date: Thu, 9 Aug 2007 21:49:45 +0100 (BST)
>
>
>I was interested in the t8 story from the magazine so
>i joined unique and Beverley (who runs Unique) emailed
>it to me the the same day.
>She did mention about not copying the info to anyone.
>I have told my sons paediatrician to contact Unique if
>they ever get any more rare genetic cases because i
>now how completely helpless i felt when my son was
>diagnosed and none of the doctors could give me any
>info or understanding.
>
>Katy. son with t8 mosiac.
>
>
>
>
>
>--- Kim Ihlenfeldt <kimihlenfeldt@xxxxxxxxxxx> wrote:
>
> > As long as the person e-mailing the person in the
> > newsletter is part of
> > Unique, I don't think that would be a problem.  But
> > it still may be simpler
> > for the person to just join Unique, because what
> > they will do is do a search
> > for anyone having the same or close to the same
> > genetic makeup, if you want,
> > and then give you their contact info.  I did that
> > for a person locally as
> > the UIHC said for her daughters genetic makeup, they
> > only knew of about five
> > to ten.  She joined Unique and they had about 300.
> > Made her feel a bit
> > better.  On the flip side, there is no one even
> > close to Candaces' genetic
> > makeup.  Just some food for thought.   :-)
> >
> >
> > >From: TRIER9@xxxxxxx
> > >Reply-To: tri-med@xxxxxxxxxxxxx
> > >To: tri-med@xxxxxxxxxxxxx
> > >Subject: [tri-med] Re: Unique Newsletter
> > >Date: Wed, 8 Aug 2007 22:46:26 EDT
> > >
> > >Or, one of us could email the person in the
> > newsletter and ask her if she'd
> > >mind corresponding with you? Most people put their
> > email addy w/their
> > >letter.
> > >Laurie
> > >Mom to Bri wt 9p
> > >
> > >
> > >
> > >**************************************
> > >  Get a sneak peek of the all-new AOL at
> > >http://discover.aol.com/memed/aolcom30tour
> > >
> > >
> > >                   Building ___ooOOoo__ Rainbows
> > >                        www.trisomyonline.org
> > >                   Families Helping Families
> > On-line
> > >
> >
> >
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> >
> >                   Building ___ooOOoo__ Rainbows
> >                        www.trisomyonline.org
> >                   Families Helping Families On-line
> >
> >
>
>
>
>       ___________________________________________________________
>Yahoo! Answers - Got a question? Someone out there knows the answer. Try it
>now.
>http://uk.answers.yahoo.com/
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>

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