[tri-med] Re: New to list-please help

Hi,
My name is Gary and my wife is Elizabeth.  We have 8 children and our youngest,
Stephen, was born October 5, 2004 and has Trisomy 13 Mosaic.  We were told that
there was no hope but the Good Lord had different plans for us and Stephen.

Our road with Stephen has certainly been challenging - he has born with a cleft
lip and pallate, has had open heart surgery, and numerous other operations - but
I can truly say that Elizabeth and I, our family and so many people that know us
have been blessed by Stephen.  He is a joy to all of us.

I would encourage you to visit our home page at
http://www.user.shentel.net/garycomp/

There is also more to our story on the livingwithtrisomy13.org site at
http://livingwithtrisomy13.org/album18.htm

Not all of the children survive and those that do often do not survive long;
however, I know that Elizabeth and I would have cherished Stephen even if we
only had him for a short time.

Regarding our other children, they have all grown and matured an incredible
amount as a direct result of Stephen.  Each of the children spends time with
Stephen - playing with him, watching him, and learning from him.  They are a
blessing to each other.

Pls feel free to e-mail me off line if you would like to talk to my wife about
the difficult decision you are making.  There is no doubt that having a child
with Trisomy 13 is a challenge but, knowing all that we have gone through over
the past two years, I can say with absolute certainty that we would do it again
- the blessings have greatly outweighed the challenges.

Pls consider e-mailing us offline to speak with Elizabeth - we would be glad to
provide you with our phone number.

Gary (and Elizabeth) parents of Daniel (17), Michael (15), Joshua (13), Rachel
(11), John (9), Nathan (7), Esther (5) and Stephen (2) (T13 Mosaic born 10/5/04)

Galations 6:9

lisa potash wrote:

> Hi- We just found out at 17 ½ weeks that our baby is positive after cvs and
> amnio for trisomy 13 mosaic. We are at Northwestern which is supposed to be
> the best around.  The doctors there and genetic counselors/ob?s-pretty much
> everyone we have talked to encourages termination.  I haven?t found anything
> on the web either that is helping to make our decision to proceed. We are
> planning to wait the two weeks until the culture grows and have another
> ultrasound but are told to expect confirmation only.  Our 17 week ultrasound
> showed nothing which they tell us means the bad cells are probably internal
> which is worse. The mosaic part makes it even harder since they say it masks
> the issues and sometimes prolongs them.  As of today, I don?t feel it is
> fair to try to have this baby born to just have it suffer and pass away so
> quickly. I am also afraid what effect that will have on the rest of our
> family.  They tell us that mental retardation is almost a definite so it
> doesn?t sound like the baby would even know it was here.  The docs say I may
> make it to term since it is mosaic.
> Any advice if you have a trisomy 13-mosaic? I am finding that it does matter
> if it is 13 and if it is mosaic.  Also, any other doctors/hosp that you
> would recommend? I did get a second opinion from Evanston and it was the
> same.
>
> Thanks
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line

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-- Desc: Card for Gary Comparetto


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

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