Guest guest Posted October 27, 2008 Report Share Posted October 27, 2008 Hi Everyone We have another new family joining us. Here is what had to say... Somebody I love may have mds. She may not. I'm just looking for information. There seem to be very few answers out there. Welcome to our family ! Please feel free to ask any questions you may have here. We will be happy to share our experiences and help you to determine if your loved one may have mosaic Down syndrome. Kristy Colvin IMDSA President ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ International Mosaic Down Syndrome Association PH: Toll Free: 1-888-MDS-LINK http://www.imdsa.org http://www.mosaicmoments.today.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 Thanks for the welcome. Like Kristy said, I have a 15 year old daughter with mosaic Down syndrome.... However, the type of mosaicism she has is not when you think of when you hear the term. She has some trisomy-21 cells and some that are partial trisomy-21 cells (the extra chromosome is missing the bottom tip, which is the part of the chromosome that is believed to cause the most severe problems in DS). Anyway, when she was born, the geneticist said he'd never seen anything like it and couldn't predict how her unusual mosaicism would affect her. After all these years, we know that her unusual mosaicism functions basically like the " normal " type of mosaicism. She's done very well developmentally and at school. Her reading, writing, and speech are all excellent, but math is kind of a struggle for her. Basically, if she can pass the high school assessment in Algebra, she should graduate with a regular diploma in a few years. (She wants to be a writer when she grows up!) She's gotten to a point in life where she feels like she's in a gray area. She can see that she doesn't fit in with the kids with obvious disabilities at her school. But by the same token, the " normal " kids don't go out of their way to befriend her, because she looks like she has DS and has a few quirks, shall we say. She really wants to meet some other kids with mDS around her age. On a side note, we have one other daughter, age 13, NDA. That's probably enough rambling for a first post! Quote Link to comment Share on other sites More sharing options...
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