Re: I have to share this with all of you

[Guest guest]

tell her to email me and recommend she go to my blog www.mosaicmoments.today.com

Kristy Colvin

IMDSA President

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

International Mosaic Down Syndrome Association

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Toll Free: 1-888-MDS-LINK

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Subject: I have to share this with all of you

To: MosaicDS , raregeneticdisorders

Date: Tuesday, April 7, 2009, 8:28 AM

I go on to www.cafemom. com occasionally.  Today I got a message

from a mother who said she watched Mystery Diagnosis last night.  She didn't

have any idea that Isabella played the Hanna. She found me because I have

Isabella list as Mosaic Down Syndrome and triple x.  She sent me photos of her

daughter and gave me a list of symptoms.  Her daughter has reflux, constipation,

is delayed in speech, slant to the eyes, some physical delays, and grand mal

seizures.  I gave her the IMDSA website and the mosaic website and rare gentics

web.  She keeps being brushed off by doctors who want to treat this as if they

were all separate issues.  I told her I would insist on seeing a genetic doctor

and have testing done.  It just makes me so mad that doctors do not take a lot

of us serious and it takes a mother or father to keep insisting.  Anyway I just

wanted to let all of you know that Hanna's story has helped spread awareness and

might have

helped get one

special little girl help that she would not have gotten if her mother would not

have seen the show.  Does anyone else have any advise for me to give this mother

who just wants answers?

Sue