Re: Welcome Aileen & !

April 8, 2004

Aileen and ...

Welcome welcome!!! So glad you found us!! I cannot believe how many

families we have joining us JUST this week!! Welcome everyone!!

So glad to hear is do so well health wise!!! That is always a

blessing!!

My name is Angel, and we're from southern California. I have 6 children,

including my son who is 11 now, with MDS, and a bowel disease called

Hirschsprung's Disease.

Look forward to getting to know you and better!!

Angel

April 8, 2004

>

> Date: 2004/04/08 Thu PM 12:11:14 CDT

> To: MosaicDS

> Subject: Welcome Aileen & !

>

> ^^^^Hello Aileen. My name is and I have a 10 year old son, Zackary,

with MDS. I can totally understand how frustrating it is to go to therapy all

the time. When Zack was young, our world revolved around therapy, doctor visits,

and trying to cope. I also, got divorced when Zack was one. My husband wasn't

able to deal with having a child with a disability.(most men can't, notice I

said most, not all). I wish I could tell you that it gets alot easier as they

get older. The challenges change. Soon you'll be chasing her around, then school

starts, then sports or girl scouts, .... I do believe that it got easier for me.

I am not sure if I just became better at coping or if life is easier as the

children get older. Do you have any other children? I have discovered that

Zack's little sister is able to communicate with him and teach him things better

than I can. I am so glad that I am able to talk to other parents. It seems to

make me feel that the things that I worry about are not so silly. THANKS.

April 9, 2004

Dear Kristy,

Thank you so much for the wonderful welcome! I have been welcomed by a lot of

people so far via email. What a terrific organization you must have! I am

excited about getting to know everyone and possibly making some new friends in

the process. I wish I could attend that convention in VA, but it's kind of a

long journey for me, I live in CO. I have joined the IMDSA (I'm pretty sure

that's the one), but I have yet to send in the $40. Thank you again for the

welcome, and look forward to chatting with you and everyone else more soon.

Aileen Schwarz

Welcome Aileen & !

Dear Aileen and ,

Welcome to our family! I am so glad that you found us! Here you will find a

loving family with open arms always willing to help! If you have any questions

or need any advice, this is the place to go!

I remember those frustrating moments with my own son, now 17. He was a late

walker and a late talker, but now, he is doing wonderfully and most of the time,

I have to ask him to quit talking! lol

Is scheduled to begin Speech Therapy? And, does she receive

Occupational Therapy? It seems to me that 2x a month for PT is not a whole lot.

Perhaps they can increase that?

Please concider joining IMDSA at www.imdsa.com . By joining, you will receive

our parent packet full of MDS information and inspirations, our quarterly

newsletter, MOSAIC WORLD, and great discounts to IMDSA functions!

We are currently planning our MDS awareness convention to be held on June

18-20,2004 at the Virginia Commonwealth University in Richmond,VA where the

ongoing MDS research is being conducted. We will have a variety of speakers all

touching topics that pertain to your child.

If you have any questions, or need any thing, please do not hessitate to

contact me.

Sincerely,

Kristy Colvin

IMDSA President

IMDSA

PO Box 1052

lin,TX 77856 USA

www.imdsa.com

The only handicap a person has are the people around them!

Mom to Arron 22, 19, Tim 17 (MDS), Stevan 16, and Garrett 7

wrote:

Yet another new family!!!!

She wrote:

My name is Aileen. My daughter, was diagnosed with Mosaic

Down's Syndrome when she was 3 months old. She is now 1 year and

still cannot crawl, walk or say anything. She is in physical

therapy 2x a month, working on her gross motor skills. Frustrating

as it is, we still work with her. I had to leave her father when

she was just 4 months old because of abuse. We have a much better

life now, and all my time is focused on her and her well-being.

I read some of the stories on the website, and I must say how

blessed I am that has almost no health problems. her only

problem is her thyroid, but she is medicated for that. She also

needs glasses, but not for a while. The stories those people told

about feeding tubes and things of that nature broke my heart.

is special, I think.

I'm happy there is a website designed for people like me. Thank you

for the opportunity to share and gain the knowledge I need to help

my child.

Aileen Schwarz

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

http://www.mosaicdownsyndrome.com

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

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

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April 9, 2004

Dear ,

Thank you for the encouraging email. It's nice to know there's others out there

like and I. You know, you asked me if I had other children. No, I

don't, but I would like to have more. It's funny you asked that because I was

talking to my best friend the other night, and I told her what most people are

probably afraid to admit--I would like another child not only to love and care

for, but because I would like to have another chance at raising a " normal "

child. And I also feel that a sibling could teach her more....like Zackary's

little sister. It seems as though another child would be able to think on more

of the same plane, you know? Wednesday was only the second time had

interaction with another baby, and it was awesome. It was like she did it

everyday. The sad part was watching this other little girl (who is only 2 weeks

younger than ) get out of her stroller and walk around, holding her sippy

cup. can't do either of those things. I try and try, but she just

doesn't seem to understand it. It will be a banner day when I see even

crawl. I'll probably break into hysterics and call everyone I know (like I did

when she finally got her first tooth!). My brother and his wife are having a

baby within the next couple of weeks, and I figured that will be walking

and talking about the same time he will. Isn't that frustrating? How old was

Zackary when he took his first steps? When he held his own cup? When he said

" mama " and actually knew what he was saying?

Sorry about the lengthy email, I am just so excited to talk to someone else who

has the same struggles. Thank you for that.