Re: Welcome new families!!

[Guest guest]

Ditto on the welcome!!!

I just cannot believe how prevalent MDS is becoming. This also means

that more and more babies are getting " correct " diagnoses also and I

am very much pleased with that!

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>

> I checked my email last night after a bit of preparing-for-school

hiatus and I can't believe how many new families we have!! To all of

you I'd like to say WELCOME! You've come to a good place for

information, support and advice. Feel free to speak up when you have

a question or concern. There are some great people here who have

already been through it all before and are gems of widsom and

experience.

> And now a bit about me. Aidan is our first-born and when he wasn't

speaking much by his 2nd birthday the Dr. ordered some tests and told

me he suspected DS. After crying all the way home, I told my husband

and we were both just shocked and in disbelief. We didn't have any

other signs except for his speech and a slight difference in his

eyes. When we got the diagnosis of mosaic Down syndrome we hit a

whole NEW place of confusion and heartache. Of course, it didn't help

that the Dr. made some comment about how he didn't know anything

about MDS so " good luck! " Even after meeting with the genetecist we

still felt just as lost and confused. Having the diagnosis of DS was

shocking enough, but then to not have any idea how to find out about

MDS and what our son's future would look like was just so much more

frustrating (as I'm sure you're all familiar with). Anyway, so long

story short, we stumbled upon IMDSA online and this support group and

the rest is

> history. Aidan's been doing really well once we got him the early

intervention and we're all sorting things out one year, one month,

one day at a time.

> After awhile of being in the support group I decided I wanted to

give back and help IMDSA in any way I could. I became the Newsletter

Editor for IMDSA's quarterly online newsletter, MOSAIC WORLD. The

newsletter is one of the benefits of having an annual membership and

is filled with information, tips, and articles from professionals,

members and individuals with MDS. Along with your membership and

quarterly newsletters (among other benefits) you also have access to

our archives of past newsletters.

> For more information about membership go to www.imdsa.org. If you

ever have any questions about the newsletter, or would like to be

considered for one of the member features, please feel free to email

me at stephanie@... Our newsletter is a valuable resource for parents

of children with MDS of ANY age so I hope you all take advantage of

what it has to offer. Our next newsletter is due out in November so

hurry and get your membership before then! Also, we are always

looking for feedback from our members so if there is a certain topic

you'd like featured, some information you need from one of our

professionals, or a review of a certain product please let us know!

If we know what our members' needs are we can make the newsletter an

even better resource for you so email today!

> So now you know all about me, let's hear all about you!  Welcome to

the group!!

>

> IMDSA Newsletter Editor

> Mom to Aidan (MDS) 6, a 4, 2, Evan 5 months

> stephanie@...

>