Introduction

January 18, 2000

Hi

Just wanted to say welcome to the group. I also have a six year old daughter

whose name is . was diagnosed by an amnio. She is in

first grade in a regular ed class and doing well. This is a great group of

parents who are always ready to offer advice or to give emotional support.

I look forward to hearing more about your daughter and again welcome.

ann (Mom to 6 yrs old, MDS and soon to be 10 yrs old)

January 19, 2000

:

Good to have you with the group. I haven't been on here for a while. I

had some problems with my computer and have been off line for a while. I

have a 4 year old (he will be 5 next month) with MDS. He was diagnosed

via amnio and confirmed at birth. He is 10%. He has no physical features.

He is in Special Pre-K, his second year, and is doing great. He has

problems with pronunciation, however, he is not in a special speech class

as his teacher is a speech pathologist. From what I've been able to read,

speech problems are common with most children with MDS (this is just my

observation). He LOVES the Nintendo and amazes us with what he can do. He

is also good on the computer. That has probably helped him the most with

his letter and number recognition. I have also noticed (from this group)

that the kids seem very adept at the computer??? With the lack of

information out there, I find the information we get from this group really

helpful. Matt is suppose to start Kindergarten next year. He should

qualify for the all day Kindergarten. (we will fight to see that he does)

Other than that, we have no idea what to expect. He LOVES school and

really learns from his teacher (no so with me, what does a mom know

anyway???) It is really great hearing about older kids. Helps me know

what to expect. Our older (6 year old) is in a Private School (one that

you have to qualify for academically) We don't know when we will have to

address this, or how we will address this (going to different schools and

why) We have thought about keeping him back a year and getting him in the

same school, but we don't want him to always be at the bottom of the class

either.....Decisions, decisions.... anyway, glad you are interested in the

group. Hope you find it beneficial.

Sharon,

mother of Matt 4 MDS, 6

September 5, 2000

:

Welcome aboard! I hope you enjoy this group! Please feel free to join in

anytime.

Beets (Mommy to Karlee, 16 mos. walking, talking and very active!)

September 5, 2000

Hi , my son is now 7 yrs old (mds) He is a bright and wonderful child.

He goes to a regular kindergarden and loves it very much. He was also

blessed with having no health problems, aside from a few ear infections.

Please ask all the questions you want, were here to help! Misty

introduction

>

> hi,

>

> my name's kevin and i have a six month old son named matthew who has

mosaic

> ds.

>

> my wife and i have been lucky in as much as we have had no major health

> problems to deal with and have been able to enjoy matthew's infancy much

as

> we did with our first son, christopher, who will be five in a few months.

>

> we are anxious to learn more about mds and look forward to speaking with

you

> over the coming months.

>

> regards,

>

> kevin mccarthy

> _________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

>

> Share information about yourself, create your own public profile at

> http://profiles.msn.com.

>

> Won't you please consider adding your personal story on the MDS website

today? http://www.mosaicdownsyndrome.com And please don't forget to check

the message board frequently...it's a great way to meet others who are

affected by MDS, who are not on our mailing list!

http://www.insidetheweb.com/mbs.cgi/mb778401

> *************************************************

>

September 6, 2000

Welcome !

Beth, mom to , 8 mos. with mds or ds

September 8, 2000

Hey :

Great to have you guys here. I have a son who is 7 and a son

who is 5 with MDS. Our oldest had all the health problems, with

frequent earaches, tubes, etc. was a breeze. Anyway, glad to have

you join the group.

Sharon (mother to Matt 5, MDS, and 7)

March 20, 2001

Welcome Ellen & -

You would be hard pressed to find a more supportive group of people. Most

likely you are on a emotional roller-coaster right now - if you need a place

to talk, vent or scream - this is it. We have all had to deal with

uninformed doctors - but realize that there are some great ones out there

too, you might want to look into finding a pediatrician who is more informed

- it will be hard to find one with experience in MDS since it is so rare -

none of the 7 Drs in our practice have ever seen it before - but we have

found one great pediatrician who is so open minded and supportive. I

support your decision to not discuss the diagnosis with anyone yet - Let

them (and yourself) get to know your son first. However, they may be

curious to know why you have Therapists coming.

If you have any questions - just give a holler.

Darlene - Mom to (2) and (4)

had the XRay for the Spinal Gap yesterday and her speech eval

last week. The good news is cognitively she is age appropriate - which

means she understands everything we say - she just chooses to ignore us :-)

However, her expressive is delayed. She begins speach therapy next month to

get those words out.

Introduction

Hi everyone- we'd like to introduce ourselves- and Ellen. We

came across this wonderful site and group while frantically searcing

for information on Mosaic DS. You see, last Monday (it's hard to

believe its only been a week) we received the amnio results of our

son's amnio. It wasn't good. We were advised he had Downs. Our

OB/GYN was very straight forward- talked about how 99% of those

patients who discover downs terminate- how difficult life is with a

handicap child- etc etc. We left devistated - with an appointment

for termination later that week. You see, this is our second

marriage- I have 2 girls 10 & 4, he has a son 11. We got married a

year and a half ago and have been pregnant 3 times! The first two I

carried to 12 weeks and the babies died. This one we discovered at

22 weeks that he would be DS. It's been alot for us to handle and I

grew up with a mentally handicap brother whose parents always put

more responsibility than should have been on me. I could'nt imagine

our children having to go through what I did. Thank the good Lord I

had a dream that something was wrong with the results- it was so real

it was scary. Because of this dream my husband and I went to the

Dr's the next day and asked to see the reports from the amnio. It

was only at this time that we found out the baby had Mosaic DS- 70%

normal cells, 30% Trisomy 21. We began to ask questions, which we

got very few answers. We told the Dr. to put the termination on

hold. I immediatly jumped on the computer and began my research,

along with contacting a genetic counselor. I can't tell you how

important the Mosaic Down Syndrome site was! Without all those

wonderful people sharing their personal stories, I don't know how we

would have found the strength to continue. The Website saved our

son's life. It saddens me that doctors can be so negative and

uninformed. While I understand that there is a wide range our son

can fall into, the diagnosis we were given was incorrect. Last week

was full of tests and ultrasounds. We had a fetal echo that showed

everything was perfect with baby 's heart. We had a second

Level2 Ultrasound that once again showed no DS markers- his femur

bone measures bigger than it should, no thickened neck, a distinct

chin, round head, opening and closing his hands, a very active baby

with no other organ problems. All of this was wonderful news and we

celebrated that night. We still have many questions, most will go

unanswered until he is born- others will wait for answers as he

develops. We plan on getting therapy for him immediately regardless

of how he appears since the cells could mostly lie in the brain. The

unknown is what scares us the most and we have our ups and downs! My

biggest fear is how our other children will react. Presently, we

have told very few- and we're not sure if we will tell the children

until he is born. OUr fear is that if we label him, and he has

minimal physical or even mental features of DS- that could negatively

affect him, and the other childrens feelings toward him. We'd love

to hear from all and everyone with you own experiences! Thank you

again for a wonderful and insightful Website and group. We look

forward to being active members and will certainly keep you all

posted on our progress. Ellen & - Attleboro, MA

Won't you please consider adding your personal story on the MDS website

today? http://www.mosaicdownsyndrome.com

*************************************************

NEW MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus

*************************************************

March 20, 2001

Dear Ellen and , I am so proud of you for giving your sweet baby a

chance in this world. This child will brighten the darkest days, and will

make you smile for no reason at all. I know you will hear this again, but

not every parent is special enough to have a special child. I have an 8 yr

old, that is the brightest blessing of my family. Words cannot describe all

the joy this child has brought to me. Just remember, do not believe all you

read or hear, it's just a template, your the one who will be living it.

After my son was born, I didn't pick up a single book about his disability.

I did look to other parents for my answers to my questions, because they

know...They are living the life. I have learned so much, and I'm still

learning. Treat your baby no different, expect the same from him as you do

from your other children. Let no one else give him slack, and never let him

tell you he can't do something. Welcome to the board!!! Misty B. mom to

Cody 8mds

> Hi everyone- we'd like to introduce ourselves- and Ellen. We

> came across this wonderful site and group while frantically searcing

> for information on Mosaic DS. You see, last Monday (it's hard to

> believe its only been a week) we received the amnio results of our

> son's amnio. It wasn't good. We were advised he had Downs. Our

> OB/GYN was very straight forward- talked about how 99% of those

> patients who discover downs terminate- how difficult life is with a

> handicap child- etc etc. We left devistated - with an appointment

> for termination later that week. You see, this is our second

> marriage- I have 2 girls 10 & 4, he has a son 11. We got married a

> year and a half ago and have been pregnant 3 times! The first two I

> carried to 12 weeks and the babies died. This one we discovered at

> 22 weeks that he would be DS. It's been alot for us to handle and I

> grew up with a mentally handicap brother whose parents always put

> more responsibility than should have been on me. I could'nt imagine

> our children having to go through what I did. Thank the good Lord I

> had a dream that something was wrong with the results- it was so real

> it was scary. Because of this dream my husband and I went to the

> Dr's the next day and asked to see the reports from the amnio. It

> was only at this time that we found out the baby had Mosaic DS- 70%

> normal cells, 30% Trisomy 21. We began to ask questions, which we

> got very few answers. We told the Dr. to put the termination on

> hold. I immediatly jumped on the computer and began my research,

> along with contacting a genetic counselor. I can't tell you how

> important the Mosaic Down Syndrome site was! Without all those

> wonderful people sharing their personal stories, I don't know how we

> would have found the strength to continue. The Website saved our

> son's life. It saddens me that doctors can be so negative and

> uninformed. While I understand that there is a wide range our son

> can fall into, the diagnosis we were given was incorrect. Last week

> was full of tests and ultrasounds. We had a fetal echo that showed

> everything was perfect with baby 's heart. We had a second

> Level2 Ultrasound that once again showed no DS markers- his femur

> bone measures bigger than it should, no thickened neck, a distinct

> chin, round head, opening and closing his hands, a very active baby

> with no other organ problems. All of this was wonderful news and we

> celebrated that night. We still have many questions, most will go

> unanswered until he is born- others will wait for answers as he

> develops. We plan on getting therapy for him immediately regardless

> of how he appears since the cells could mostly lie in the brain. The

> unknown is what scares us the most and we have our ups and downs! My

> biggest fear is how our other children will react. Presently, we

> have told very few- and we're not sure if we will tell the children

> until he is born. OUr fear is that if we label him, and he has

> minimal physical or even mental features of DS- that could negatively

> affect him, and the other childrens feelings toward him. We'd love

> to hear from all and everyone with you own experiences! Thank you

> again for a wonderful and insightful Website and group. We look

> forward to being active members and will certainly keep you all

> posted on our progress. Ellen & - Attleboro, MA

>

> Won't you please consider adding your personal story on the MDS website

today? http://www.mosaicdownsyndrome.com

> *************************************************

> NEW MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus

> *************************************************

>

March 20, 2001

Hi and Ellen!

You truly have done yourselves a favor by making the decision to keep your

son! I am so happy for you guys. I was almost 22 when my son Caleb was born

and never thought I had to be concerned with having a child with any type of

Downs Syndrome. Well, I couldn't have asked God for a more beautiful child

than Caleb. It is scary at first. We found out Caleb had MDS when he was 6

months old, and I was scared for his future. But now he is almost three

years old and doing great! We love him dearly and feel blessed by his

presence and honored to have him as our son. I am sure you will feel the

same about your little one! Feel free to e-mail me if I can help.

Take Care,

, mom of Caleb (2, mds)

March 21, 2001

Welcome Welcome Welcome

Don't hesitate to call out if you need any help. I have a 14 almost

15 (is she really that old) MDS daughter and wouldn't swap her for

the world. We have treated her as normal and I have pushed her to do

things she wouldn't normally have done. She is a great person to have

around!

So glad you decided to keep your son. You will be so richly rewarded!

You have found a great bunch of people who will not hesitate to help

you, no matter what part of the world they are from.

Take care

Marie Hunt mum to Felicia 14 MDS and Jayden 12

> Hi everyone- we'd like to introduce ourselves- and Ellen. We

> came across this wonderful site and group while frantically

searcing