[tri-med] Re: Partial Trisomy 1, Partial Monosomy 6

Hi Sue 
My daughter Charlotte has partial trisomy 16 and partial monosomy 9. She is 3 
and a half and is oxygen dependent and has a g tube. I found this list while I 
was pregnant with her and it has been very helpful even though no one has the 
same diagnosis. Welcome!
------Original Message------
From: jwaite
Sender: tri-med-bounce@xxxxxxxxxxxxx
To: tri-med@xxxxxxxxxxxxx
ReplyTo: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: Partial Trisomy 1, Partial Monosomy 6
Sent: Jan 27, 2009 8:54 AM

----- Original Message ----- 
From: "Sue Stockton" <tgsrrs@xxxxxxxxx>
> This is my first post to this site, and I'm curious if anyone else has a 
> child or children with this particular diagnosis. I have had three 
> children with this condition. Two have died. My son, Timmy, died at the 
> age of 2. My daughter, Sheila, died at 11 1/2 months. Her twin sister, 
> Becky, is 12 now, and has many physical diagnoses, and mental retardation.

Hi and welcome Sue! Glad you've found us but sorry you had a reason to do 
so.

First off, I can't even come up with adequate words to say with the loss of 
your 2 children..........hugs to you at the very least.

Secondly, those of us without a tri-18 or tri-13 diagnosis are considered 
'rare, rares'. Tend to be few of us around.
Don't think anyone here has the EXACT same diagnosis (same is true for quite 
a few folks around here) as you dealing with.

While our kids may not have the same dx often they share many common issues 
be they medical, physical, emotional, social, etc.
If you have any issues or questions there is often someone here who has had 
some experience, knows a direction to send someone for help or at least a 
word of encouragement.

You just never know where a question or comment will lead that benefits so 
many in some way! (a 'behold the power of the list' moment).

I look foreword to hearing more about Becky.

Michelle mom to Alex (21, partial trisomy 14 mosaic) and Molly (18)
MichiganUSA


                  Building___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line


Sent from my Verizon Wireless BlackBerry                  Building ___ooOOoo__ 
Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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