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

Welcome Tiffany, you will also find the folks on this list of great 
help no matter what the Trisomy number (flavor).  It seems that we 
share many of the same issues. I'm here because of my grand daughter 
Tess who has Trisomy 18. She is nearly 12 years old and is profoundly 
disabled, but that is not all there is to Tess. She is a great little kid.

At 09:32 AM 28/01/2009, you wrote:
>   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
>
>
>
>No virus found in this incoming message.
>Checked by AVG - http://www.avg.com
>Version: 8.0.176 / Virus Database: 270.10.13/1915 - Release Date: 
>25/01/2009 6:13 PM

"What does an ant know about the Universe?
Just because it has no knowledge of the Universe
Doesn't mean it doesn't exist"

Jocelyn,  wife to Frank,  Mother to Ian, Gillian and Susan, Nanna to 
Carly 21  Mathew 20,  Ashleigh 19, Alex 16,  and Tess  (Trisomy 18,) 
age 11 yrs,  & Benny the Maltese, plus one amazing DIL and two 
amusing SIL's of whom I'm very fond, and their extended family who 
are too many to list here.   

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

Other related posts: