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Thread: Identifying Genes Which Cause CDH

  1. #21
    Could you mail me one so I can see what it is about? Then if I want to get them, I'll call Meaghan. You are the best!!
    Mommy to Shannon Elizabeth (01/16/07-01/19/07 LCDH and HLHS) Peanut Shelbe (miscarried 9/23/07 @ 8 weeks- due 4/10/08 ) Gracie Kathleen & Lily Anne (8/28/08 Blessings from their big sisters!) Shannon's Website! [url]www.shannonelizabeth.virtual-memorials.com[/url]

  2. #22
    Not a problem-I will get it copied and sent out ASAP.
    I am sure Dawn gets one-I wonder if the research team would let us put it on CHERUBS??Then everyone that wanted to read it could. It just gives me such great hope that research is being done to help with this horrible birth defect. I pray for the research team everyday since I received this newsletter and wish them only the best on what wonderful things they are doing.
    Stephanie (Shelby's Mom LCDH 7-10-06)- ECMO 7 days- 2 DH repairs- hital hernia repair- Cliff Lip repair- Nissen and Mickey button. Shelby is eating and drinking by mouth now!!! THIS IS FANTASTIC!!!!! Mom to Lexi 8- Morgan 6 and Taylor 5. Blessed to have our little butterfly and our beautiful girls. [url]www.youtube.com/cdhsupport[/url] - Shelby's Journey [img]http://i258.photobucket.com/albums/hh257/gracebutterfly/CDHAwarenessRibbonShelbysmall.jpg[/img]

  3. #23
    Thanks Steph! They are wonderful people to help! I wish them all the best in the research!!
    Mommy to Shannon Elizabeth (01/16/07-01/19/07 LCDH and HLHS) Peanut Shelbe (miscarried 9/23/07 @ 8 weeks- due 4/10/08 ) Gracie Kathleen & Lily Anne (8/28/08 Blessings from their big sisters!) Shannon's Website! [url]www.shannonelizabeth.virtual-memorials.com[/url]

  4. #24
    You know what, i think this is the research we were going to participate in, but that was right after cole was born and he was sick and sick and sick..
    Steph, have you done it
    I was very intense, as it should be, but the family tree stumped me, my dad had 15 brothers and sisters !

  5. #25
    My family is interested in taking part in the CDH study. I was just wondering who covers the cost of the testing?

  6. #26
    I am interested as well
    cdh found at birth. 28 days NICU. Vent 7 days. Repair at 3 days. No ECMO. NG Tube 28 days http://i319.photobucket.com/albums/m...don/0004-1.jpg

  7. #27
    I would call Meaghan if you are interested.
    She is super nice and will answer any and all questions you may have.
    Meaghan is coming to the conference to talk about the CDH Research.
    I am excited to hear all about it.
    I have started to fill out our paper work for the study--we have to wait for a time when Shelby has her blood drawn, then Shane and I will have ours drawn and we will send the viles to Meaghan.
    They sent me the paperwork and sent the packaging for the blood draws and a pre-paid envelope to send them back.

    I hope this has helped.
    Stephanie (Shelby's Mom LCDH 7-10-06)- ECMO 7 days- 2 DH repairs- hital hernia repair- Cliff Lip repair- Nissen and Mickey button. Shelby is eating and drinking by mouth now!!! THIS IS FANTASTIC!!!!! Mom to Lexi 8- Morgan 6 and Taylor 5. Blessed to have our little butterfly and our beautiful girls. [url]www.youtube.com/cdhsupport[/url] - Shelby's Journey [img]http://i258.photobucket.com/albums/hh257/gracebutterfly/CDHAwarenessRibbonShelbysmall.jpg[/img]

  8. #28
    Meaghan is coming to our conference ???
    YAY!
    That is great, b/c I am very interested in getting restarted with participation, It was just flat out bad timing for us !
    Now is much better!!!

  9. #29
    Yep-Meaghan is coming to the CHERUBS conference!!!
    I know she will give a great presentation and am looking forward to it myself.
    Any questions you may have--I would write down and you will be able to ask her face to face.
    Stephanie (Shelby's Mom LCDH 7-10-06)- ECMO 7 days- 2 DH repairs- hital hernia repair- Cliff Lip repair- Nissen and Mickey button. Shelby is eating and drinking by mouth now!!! THIS IS FANTASTIC!!!!! Mom to Lexi 8- Morgan 6 and Taylor 5. Blessed to have our little butterfly and our beautiful girls. [url]www.youtube.com/cdhsupport[/url] - Shelby's Journey [img]http://i258.photobucket.com/albums/hh257/gracebutterfly/CDHAwarenessRibbonShelbysmall.jpg[/img]

  10. #30
    That is so great she will be there, she seems so nice!
    Steph, i just emailed a pic of cole you will appreciate ... to your cherubs email..

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  1. Identifying Genes Which Cause CDH
    By admin in forum Research Studies (Public)
    Replies: 0
    Last Post: 08-25-2007, 03:13 PM

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