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

  Hello, this will be my first post on the site too. So forgive me if I mess 
up. I have two boys Paul 13 and Danny 10. They are both severely mentally 
disabled. Along with that other health problems have come and now were dealing 
with seizures, which they have always had but now the meds don't seem to be 
controlling them.  Anyway, Three years ago we finally found out their 
diagnosis. They have a partial monosomy of 6q and a partial trisomy of 8q. They 
inherited it from me which means I'm a balanced translocation carrierer and 
they are unbalanced. I was wondering if Sue and the childrens father were 
tested for the chromosome disorder? And yes I also would like to see if there 
are anybody else with this same rare translocation?   Thank you. 
 
Tiffany Sprishewsky
--- On Tue, 1/27/09, jwaite <jwaite@xxxxxxxxxxxxx> wrote:

From: jwaite <jwaite@xxxxxxxxxxxxx>
Subject: [tri-med] Re: Partial Trisomy 1, Partial Monosomy 6
To: tri-med@xxxxxxxxxxxxx
Date: Tuesday, January 27, 2009, 10:54 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




      
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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