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This is very interesting. We met with a very prominent geneticist in New York

last week with Kira, who is now almost 6 weeks old. He told us that if he didn't

have her test results, he would never be able to tell us what her diagnosis is

because she has no features of mosaic or full trisomy 21 and is incredibly

strong and alert, doing so many things she shouldn't be doing yet. Of course, we

are fully aware that this may not have any bearing on her future development and

we are totally ok with that! She is awesome and such a joy! We did ask him,

however, what our chances of having another child with MDS are. He told us 1%

based on the method he thought the MDS occured by. We asked if it was possible

that one of us was a carrier or had MDS. He dismissed this as impossible

because we do not exhibit any features, but reading this article and some other

stories we have come across makes us want to revisit this when we see him again

in February. Just wondering if any other parents had discusse this with a

geneticist and what responses they had received.

and Baran

Kira - 6 weeks MDS

>

> This was a great post! Please read! This is one of the many reasons why we

have IMDSA!

> Feel free to leave a comment on her blog.

>

> http://walkonthehappyside.wordpress.com/2010/12/11/a-true-test-of-acceptance

>

>

> Hellard

>

> IMDSA President

>

> brandy@...

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> International Mosaic Down Syndrome Association

>

> PH:

>

> Toll Free: 1-888-MDS-LINK

>

> http://www.imdsa.org

>

>

>

>

>

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