[tri-med] Re: Looking for others with experience with Trisomy 13 children

Hi Gary and Elizabeth,

Congratulations on the new member of your family!  I live in 
Nelson County, VA.  My 7 month old daughter, Ruth, is full trisomy 
13.  I would be happy to share our experiences with you.  Welcome 
to the list!

Rebecca, mom to Kashi (18) and Ruth (full t-13, 
3/25/04), "stepmom" to Josh (33) and Joe's main squeeze



---------- Original Message ----------------------------------
From: Gary Comparetto <garycomp@xxxxxxxxx>
Reply-To: tri-med@xxxxxxxxxxxxx
Date:  Tue, 19 Oct 2004 13:54:38 -0400

>Hi,
>I=92m new to this e-mail list but I wanted to introduce my wife and 
I and
>our little baby Stephen.  Stephen was born on October 5th.  He 
was a
>full-term baby and came with a lot of excitement =96 he was born in 
an
>ambulance as it reached the emergency room drop-off!  We have 7 
other
>children ranging in ages from 3 1/2 years old up to 15 years old.
>
>Prior to his birth, we were told that Stephen appeared to have a 
cleft
>lip and palate =96 this was identified during a routine ultra-sound.
>Shortly after birth, a chromosome test was performed and we were 
told
>that Stephen has Mosaic (or partial) Trisomy 13.  His condition 
includes
>cleft lip and palate, rapid breathing (it speeds up and slows down
>throughout the day), mild/moderate hearing loss, some problem 
with the
>eyes (still not sure what the bottom line is =96 he appears to be 
able to
>track us and is sensitive to light), his heart is displaced but 
this
>doesn=92t appear to be a problem, the heart has two small holes but 
the
>doctor said they will likely repair themselves, and a few other 
little
>things.
>
>We just took him home from Washing DC Children=92s Hospital last 
night and
>he did very well on the ride =96 about 2 hours =96 and that was a 
blessing!
>Right now, he=92s able to get 1/3 to =BD of his nourishment using a 
Haberman
>bottle and the rest via an NG tube.  He still has a little trouble
>keeping all of his feedings down but it=92s not too bad.
>
>I was wondering if there was anyone with a child having Trisomy 
13.  We
>were told that there have only been about 300 cases of Trisomy 13 
in the
>Virginia/Maryland/Washington DC area (we live in Berryville, VA) 
over
>the last 30 years by our geneticist and that Mosaics only account 
for
>about 5% of that total.  We=92d love to communicate with someone 
who=92s
>either had a full or Mosaic trisomy 13 child.
>
>Thanks
>Gary and Elizabeth
>
>
>-- Binary/unsupported file stripped by Ecartis --
>-- Type: text/x-vcard
>-- File: garycomp.vcf
>-- Desc: Card for Gary Comparetto
>
>
>                  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

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