Welcome Kim and her daughter Emmy!

[Guest guest]

Hi everyone! We have another new family joining us tonight. Here is what they

had to say....

My name is Kim and I am the mom of a 14 month old daughter named Emmy. She may

have mosaic down syndrome, we are awaiting her test results. Thanks

Welcome Kim! First I would like to say sorry about the delay in responding to

your request to the egroup. Have you received Emmy's results yet? How are you

and Emmy doing? Feel free to ask any questions that you may have!

Hellard

IMDSA President

brandy@...

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

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

http://www.imdsa.org

[Guest guest]

I agree with you.  I think it is just misdiagnosed, and the numbers here speak

for it self, and that it is not rare as the medical community think.

 

________________________________

To: MosaicDS

Sent: Sat, March 12, 2011 10:47:26 AM

Subject: Re: Welcome Kim and her daughter Emmy!

 

Welocme to all the new families.

I have noticed over the past couple of years that there is a growing

daily/weekly number of new families joining the group who have a child who has

been newly diagnosed with Mosaic Down Syndrome. For MDS to be such a *rare* form

of Down syndrome, according to the information that remains steadfast &

unchanged out in the medical field, isn't that an odd occurence? I had even

contacted, at one point, NDSC to mention this and see if they would revisit

their numbers and they said they were keeping their numbers the same.

Shouldn't we be doing something to correct the obvious gross error in the

percentage of numbers being reported for MDS? Like Autism, it seems like MDS is

not so rare anymore.

>

> Hi everyone! We have another new family joining us tonight. Here is what they

>had to say....

> My name is Kim and I am the mom of a 14 month old daughter named Emmy. She may

>have mosaic down syndrome, we are awaiting her test results. Thanks

>

> Welcome Kim! First I would like to say sorry about the delay in responding to

>your request to the egroup. Have you received Emmy's results yet? How are you

>and Emmy doing? Feel free to ask any questions that you may have!

>

>

> Hellard

>

> IMDSA President

>

> brandy@...

>

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

>

> International Mosaic Down Syndrome Association

>

> PH:

>

> Toll Free: 1-888-MDS-LINK

>

> http://www.imdsa.org

>

>

>

>

>