Wow! Welcome to all our new members!!!!!!!!

[Guest guest]

Wow ! I am blown away! LOL

Welcome Michele, Deborah, , , and

families!

First, Michele....

I am so glad that you have found us! Right now,I am sure you are full of

questions and a little worried. That is ok! We have all been there! You will

find all your answers here on this group, so ask away! If we don't have an

answer, we will do our best to find it for you! Many professionals miss this

diagnosis, because they just don't know a lot about MDS. We at IMDSA are working

hard to change this! We are reaching these professionals by leaps and bounds,

and eventually everyone will get their diagnosis at birth! Right now, it is good

that you are getting the diagnosis. This will explain the complications he has

been having in the past, and you will be able to work towards the future! During

our 2nd annual conference on June 24-26,2005 we will be inviting many

researchers, and professionals to educate them on the affects and symptoms of

MDS. This way, families like yourself, wont get a diagnosis this late.

Second, , Deborah, and ..

I am glad that you have found our family! You will find so much information here

and will be able to help so much more! A lot of our families experience

some behavior problems, so this can be addressed and possibly you can find a

solution to your problem. If is having a difficulty expressing himself,

that could be the reason for his aggression. Or, perhaps you can look at the

times that he is being aggressive and think about what it is that is making him

act out. This is one subject that we will be planning to address at our 2nd

annual conference on June 24-26,2005 in Houston,TX.

Third, ....

It's wonderful that you are considering adopting a little guy from Russia. You

will find out so much from talking with our families here! It is possible for

someone to have 1% of Down syndrome cells. I have a scientist researcher friend

in Russia that is doing a study on MDS. It is my impression that they do not

have the capabilities to do karyotypes there due to the cost. But, that could be

just her facility. I will email her and ask her if ANYONE in Russia does

Karyotypes. Good luck on your home study! I hope you get him!

Again, welcome to all of our families!

Sincerely,

Kristy Colvin

IMDSA President

MOM to Arron 23, 19, Tim 18 MDS, Stevan 17, and Garrett 8

THE ONLY HANDICAP A PERSON HAS ARE THE PEOPLE AROUND THEM!

JOIN IMDSA TODAY AT: www.imdsa.com

wrote:

.... and we have three new members of the e-group.

1) Michele wrote: " My 4 year old son was adopted when he was 2 years

old. He has always had a complex medical history and sees a lot of

medical specialists. Last week, we went to see a new doctor in our

continuing quest for information about the cause of his hypotonia. I

was quite shocked when this new specialist, a physiatrist, told me

that he was quite sure that my son has MDS. I had never heard of

this and couldn't believe that it would not have been recognized

previously. I have read some of the stories on your web page and

have learned that for some of you, it did take 3-4 years to get a

diagnosis. We have been referred for genetic testing, but I am

anxious to learn more in the meantime. The developmental

pediatrician who has followed my son since birth has indicated to me

that the physiatrist may be correct in his suspicion, but that she

did not recognize the cluster of symptoms previously. I would just

like to learn as much as I can so that I will be prepared in January

in the event that testing proves this is MDS. Thank you. Michele "

2) Deborah wrote: " Hello, we are and Deborah Gutierrez. Our son

is 12 years old and was diagnosed with Mosaic Down Syndrome at

the age of 8. has 4 sisters, they are Sesilia 16, Alina 14,

Hope 6 and Molly 4. is a sweet and very playful child.

does have the tendency of having a very bad temper at times. Our

family has been able to adjust to 's needs, but I have noticed

lately that has been a bit more aggresive lately and has been

acting out at school. My intentions for joining the group was to be

able to chat with other families who may be experiencing behavior

issues. "

3) wrote: " Hi. I am a single mother of a 23 month old

daughter. I am considering adopting a 15 mth old boy from Russia who

has been diagnosed with 1% down syndrome. This percentage seems low

to me. I am not sure that Russia has the resources to make such a

specific diagnosis, but that is the diagnosis they give. I wondered

if any of your members have heard of a MDS diagnosis with this low of

a percentage of Down cells. The percentage really doesn't matter, I

am just curious. I would also like any advice or information that

your members can give me. I am in the process of the home study

right now. Thank you for your help. Osborne "

Welcome Michele, Deborah, , , Hope, Molly, and

families!

Become a member of IMDSA today at http://www.imdsa.com

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Learn more about MDS http://www.mosaicdownsyndrome.com

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Contact IMDSA Today at:

IMDSA~PO Box 1052~lin,TX~77856~USA~1-

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