Welcome and Ronnie!

[Guest guest]

Hello and Welcome to our group!

My name is Kristy Colvin and I am the president of

International Mosaic Down Syndrome Association.

(IMDSA) I am so glad that you found us! What makes you

believe that Ronnie has MDS? Do you feel that she

shows more physical signs of Ds than Rubinstein-Taybi

syndrome? Have the doctors done any karyotypes on her

to determine her diagnosis?

Please check out our web sites for more information on

MDS.

At http://www.mosaicdownsyndrome.com you can read

personal stories from other parents experiencing the

same things you experience! Also, you will discover

links to doctors knowledgeable in MDS. You can speak

with these doctors through email and you can request

the MDS research book done by Dr. -Cook. Please

fill out the information sheet there. This way, we can

have a record of you and your wonderful family!

At http://www.imdsa.com you will find lots of

information on IMDSA! Here you can become a member of

our growing organization. By becoming a member, you

will receive our quarterly newsletter “Mosaic World”,

our parent packet full of MDS information, and great

discounts to IMDSA functions! We are currently

planning our first MDS awareness convention to be held

in November,2003 in Orlando, Florida. You can learn

how to register for the convention on our web site as

well. Please consider purchasing a calendar from

IMDSA. The link is under “promotions” on the site. Our

IMDSA 2003 calendar is filled with some of our

beautiful children with MDS. All countries holidays

are listed on this calendar, so that no one is left

out! Your tax deductible donation of $15.00 USD will

go towards helping IMDSA reach more people touched by

Mosaic Down syndrome.

If there is any way I can be of assistance, please do

not hesitate to ask!

Sincerely,

Kristy Colvin

President IMDSA

Mom to Arron 21, 17, Tim 16(MDS), Stevan 15,

and Garrett 6

The only handicap a person has are the people around

them!

Dear Helen and all,

I am new to the group and must admit that I am not

sure my daughter

has MDS. She has been tentatively diagnosed with

Rubinstein-Taybi

syndrome, but does not show some of the most common

characteristics

of it. I am responding to Helen because Ronnie's

blood testing also

came back normal, and I am wondering what leads Helen

to believe her

son may have MDS. If her doctor is not agreeing with

her, what does

he think it is?

My daughter Ronnie is 2 1/2. She has microcephaly,

short stature,

mild hypotonicity, hypostimulation to tactile, mild

feeding

difficulties, a beaked nose, thin upper lip, very

small hands and

feet, significant langiage, speech and cognitive

delays, mild gross

motor delays. I think that's it. Any input would

very appreciated.

THanks,