[tri-wings] Re: TRIS - Megs

> I'm afraid I'm going to need more information from you though, as I'm
> not at all familiar with your child's dx, etc.  I have your name and 
> e-mail
> addy, so I guess this is what I need to know to register your family in
> the project.


Hi Fawna!  I've been watching all the activity about TRIS and I can also 
fill one out if you like.  I would do the word document...it sounds the 
easiest.

Michelle Rose Ekis had T18.  She was born on April 1, 2003 and died on Oct. 
26, 2003.

I am so glad you are doing this.  I remember gathering lots of info. off of 
this list to arm myself before doctors visits and all decisions because the 
doctors just didn't have the experience with T18.

Ann mom to Sarah (13), Beth (11), Mark (9), Brian (7)
& beloved Michelle T18 (4/1/03-10/26/03) wife to Joel
Overland Park, Kansas   USA

"I know God will not give me anything I can't handle. I just wish that He
didn't trust me so much."
Mother Teresa









> Child's Name:
> Trisomy Diagnosis:
> Birth Date:
> Angel Date:
>
> And which survey format would you like?
>
> By snail mail: With prepaid return envelope (we'll need your mailing
> address off list please at fawna33@xxxxxxxxxxxxxx please).
>
> Or by computer:
>
> PDF file that you print out, fill in, and snail mail back.
>
> Or a Word Document attachment that you save to your computer,
> fill in, and then send back as an e-mail attachment.
>
> Fawna, mom to Philina 23 yrs (PT6p & Moya Moya Syndrome)
> Research Coordinator: Tracking Rare Incidence Syndromes
> (TRIS) project - We are currently enrolling all varieties of
> Trisomy 13 & 18, living & deceased, for the pilot phase.
> To include your child's data and help update the medical
> literature please see: http://web.coehs.siu.edu/Grants/TRIS/
> And to add a link for your Trisomy child's personal web page
> please see: http://www.livingwithtrisomy.org/
>
>                  Building ___ooOOoo__ Rainbows
>                       www.trisomyonline.org
>                  Families Helping Families On-line
> 

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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