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Re: Digest Number 1636

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very good point... I think its been more recently that they've learned with

Mosaicism (of any kind) can have different ratio's in every different

organ... so while your son was tested at 75% affected...that was just the

blood

(assuming for the sake of conversation!!) So, his skin might be 0% affected,

and his brain may only be 10%... his bowels could be 90%...who knows. So

you're right, it's really impossible for any doctor or geneticist to tell you

what to expect regarding an MDS child....there is just NO way to know!!

~~ANGEL~~

Mom to:

, 11, Mosaic Down Syndrome/Hirschsprung's Disease

Lance 16, Tyler 12, 9,

Jaeda 8 and Shayne 2

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Joe does not have any DS characteristics on his face. His geneticist said

that his markers are all from the waist down. Anyway, his percentage of

cells was 75% trisomy. His development is right on track with the exception

of speech. Even doctors can't believe it when I tell them he has down

syndrome. I just mention this because he has a very high level of cells

affected. I think that saying that severity of MDS depends on % cells is

inaccurate. Even the essays that have been posted tell us that we can not

use the percentage of cells as a predictor of how our kids are going to do.

I just wanted to mention this for the new parents because I too believed

this when I began my search for information. I urge you that if your child

has a high percentage of cells to not be discouraged. Just take it day by

day!

Mom to Joe 2 MDS

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