Re: Another new Grandma!!!

[Guest guest]

Welcome to our family! What is your name? Where do you live? What is your

grandchild's name?

Alice Poholsky

cell

[Guest guest]

Hello,

I am Horn from east Texas. The grandmother of 4 month old who

lives in Tulsa. The geneticist suspects he is mosaic, but its not official

yet. He shows little signs of Downs and is a Tet baby. Ironically he just had an

emergency shunt surgery this weekend, we got home a couple hours ago with his

two sisters (4 and 8 yr. olds) and will take them home next Sunday

weathered the surgery just fine and the cardiologists says he hopes

he has bought enough time to delay the rest of surgery in 6-9 months.

Tulsa has a great Downs program, but theres no support group or etc within

100 miles to me and I'm always searching the web. So glad I found your site, the

first such I had found on mosaics. I bet I've downloaded reams of paper

dealing with Downs and now mosaic, ditto on Tetralogy of Follet....I'm kept busy

educating (as much as I can!) my family and friends. And believe me there are

some who really needs educating!

I just learned theres a lady in my community who has a 19 or 21 yr old son,

and she's writing a book about her experience and life with the son. I want to

contact this person, but not sure whether I'd be intruding. This is all so new

to me, and I really do hunger for contact with parents of and the children

themselves. I've downloaded all the personal stories from your web site and

spent hours reading them.

Thanks for allowing me to join.

Sandy

[Guest guest]

Hi !

Where in East Texas are you? I am in a small town called lin, just between

Waco and /College Station. I am glad to hear that is doing well

from his surgery. It is amazing how much a little guy can go through!

You will find that our support group is unique. Because we are online, we can

offer support on a daily basis, vs the monthly support groups. Also, most

support groups for Ds do not offer the information that families need when they

have a child with MDS. Please tell 's parents about our group as well!

We would love to offer support and information to your whole family!

Perhaps, you and your family can make plans to join our IMDSA conference in

Houston this coming June! We would love to see you all there!

Kristy Colvin

IMDSA President

Become a member of IMDSA today at http://www.imdsa.com

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Learn more about MDS http://www.mosaicdownsyndrome.com

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Contact IMDSA Today at:

IMDSA~PO Box 1052~lin,TX~77856~USA~1-

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