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Old 06-26-2008, 02:11 PM - Thread Starter
 
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ataxia telangiectasia.

Mom to two perfect kids earth.gif  surrogate to two sweetpotatos heartbeat.gifheartbeat.gif born 4.21.11  

I love someone with ataxia telangiectasia http://www.atcp.org

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Old 06-26-2008, 04:29 PM
 
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s I'm so sorry.
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Old 06-26-2008, 06:23 PM
 
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I am so sorry.

I know that that was one of your worst fears.

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Old 06-26-2008, 06:40 PM
 
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Old 06-26-2008, 06:49 PM
 
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Old 06-26-2008, 08:09 PM
 
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For you, and your little one
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Old 06-26-2008, 08:23 PM
 
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I'm sorry. That's a hard one to have to deal with.

Lynnteapot2.GIF, academicreading.gif,geek.gif wife, WOHM  to T jog.gif(4/01) and M whistling.gif (5/04)
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Old 06-26-2008, 09:28 PM
 
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Old 06-26-2008, 09:49 PM
 
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I'm sorry.

Rachelle, mommy to 8 year old boys! 

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Old 06-26-2008, 10:50 PM
 
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I am so very, very sorry.

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CD(DONA) and Birthing From Within Mentor and Birth Doula
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Old 06-26-2008, 11:03 PM
 
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Big, big hugs to you momma. *hugs*
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Old 06-27-2008, 12:01 AM
 
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I'm sorry.

We are here for you.

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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Old 06-27-2008, 12:01 AM
 
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homemademomma - I've been thinking a lot about this news since I saw your post a couple of hours ago. I hope you will keep coming here for support from us here on the SN forum. But I also wanted to add that I hope you are able to find other parents who have this as a diagnosis for their LOs as well. I don't know what the doctors are like and how much support they are offering, but I hope that you can find really great support as you continue on this journey. I wish you much peace and courage.

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Old 06-27-2008, 12:08 AM
 
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Had to google it- I'm so sorry mama.

To my husband I am wife, to my kids I am mother, but for myself I am just me.
we're : with and : and
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Old 06-27-2008, 02:03 AM
 
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I'm so sorry
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Old 06-27-2008, 02:15 AM
 
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Old 06-27-2008, 02:36 AM
 
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Old 06-27-2008, 11:33 AM
 
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Old 06-27-2008, 07:09 PM
 
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Gosh. I googled. That's really hard, mama.
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Old 06-27-2008, 08:56 PM
 
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I am so sorry. I will be praying for all of you.

Mamma to three boys : We love :::
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Old 06-27-2008, 10:51 PM
 
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I'm so sorry
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Old 06-28-2008, 12:15 AM
 
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Old 06-28-2008, 12:32 AM
 
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Old 06-28-2008, 12:38 AM
 
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Old 06-28-2008, 01:29 AM
 
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Mama of three.
 
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Old 06-28-2008, 01:35 AM
 
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I am so sorry.

 2/02, 4/05, 2/07, 11/09, and EDD 12/25/11 wave.gif

 

 

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Old 06-28-2008, 10:42 AM - Thread Starter
 
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thanks everyone. luckily there is a great organization, atcp.org, that is actually based in florida. i have been in touch with other parents whose children have a-t, as well as with a family support coordinator who helps to get everyone set up with the resources they need.
plus i am SO lucky because both my parents came down the day we got her diagnosis, and they are watching my kids and helping to pack my house so we can get ready to move to be closer to our family. they have been a godsend. it is so hard because we have NO money(luckily no debt except our mortgage), and our house still needs SO much work, and the market is so poor right now. we really need to unload our house. but my parents are really helping me figure it out, financially and emotionally.

i am in shock, even though i KNEW, from the moment i heard about A-T, that this was what she had. she is happy and healthy right now, so i am trying to focus on that.

on a lighter note, my 4 year old and I were talking about dd, and i was telling him how she will need a wheelchair someday. he said "that's not fair!! i want a wheelchair too!" i told him not to worry, i was sure his sister would share. that made me smile!

Mom to two perfect kids earth.gif  surrogate to two sweetpotatos heartbeat.gifheartbeat.gif born 4.21.11  

I love someone with ataxia telangiectasia http://www.atcp.org

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Old 06-28-2008, 04:57 PM
 
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Quote:
Originally Posted by homemademomma View Post
. luckily there is a great organization, atcp.org, that is actually based in florida. i have been in touch with other parents whose children have a-t, as well as with a family support coordinator who helps to get everyone set up with the resources they need.
plus i am SO lucky because both my parents came down the day we got her diagnosis, and they are watching my kids and helping to pack my house so we can get ready to move to be closer to our family. they have been a godsend. it is so hard because we have NO money(luckily no debt except our mortgage), and our house still needs SO much work, and the market is so poor right now. we really need to unload our house. but my parents are really helping me figure it out, financially and emotionally.

i am in shock, even though i KNEW, from the moment i heard about A-T, that this was what she had. she is happy and healthy right now, so i am trying to focus on that.

on a lighter note, my 4 year old and I were talking about dd, and i was telling him how she will need a wheelchair someday. he said "that's not fair!! i want a wheelchair too!" i told him not to worry, i was sure his sister would share. that made me smile!
I'm so glad you're getting support from family and have found other parents on this road.

How cute about your son's response. My four year olds think wheelchairs are cool too.

I continue to think about you and if you don't mind I'll pray that your house sells and you find comfort and strength.

Rachelle, mommy to 8 year old boys! 

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Old 06-28-2008, 06:16 PM
 
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