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CHARGE syndrome

SnowflakeBride06SnowflakeBride06 member
in Special Needs

My step-sister's son was born last night and dx with CHARGE, they knew he had a blockage in his esophagus and 1 kidney but at his birth he was DX'd.

His esophagus isn't attached to his stomach, one ear is slightly deformed but thats all they know right now.

Anyone have any info or experience with this genetic disease?

I just want to be able to support her!



 6/09 right tube loss (fallopian torsion) 12/09 BFP #1 (DD born 9/10)
8/12 dx Lupus (ANA+/APA-), 12/12 BFP #2  natural m/c 6w 2d 
TTC#2  since 9/12  50mg Clomid/Ovidrel IUI #1 Beta 10/4=BFN
                             50mg Clomid/Ovidrel IUI #2 Beta 11/1= BFN
                                  100 mg Clomid/Ovidrel IUI #3 Beta 12/26=BFFN
100 mg Clomid/Ovidrel IUI #4 Beta 2/14= BFFN
Took a LONG Break
Lots of Luck and Love BFPB for life KOFMKG
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Re: CHARGE syndrome

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    jujujuju member
    My DD was diagnosed this time last year, email me at julia1779@yahoo.com. The most important thing we have after we have gotten her medically stable is early intervention Olivia has come on leaps & bounds. I have no problem speaking w her or you when you are ready
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    thefuturemrskudlathefuturemrskudla member

    Your sister (and you) should join the CHARGE Syndrome Foundation (it's free).  www.chargesyndrome.org is the website, and there's a wealth of information there.  Also, they can put her in touch with parents of CHARGE children in her area.

    There is a conference in Orlando this July, maybe you could attend.

     

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    lvisserlvisser member

    We have close friends who have a son with CHARGE..

    If you want, I can get her in touch with them, they are a WONDERFUL family... have her (or you can) email me at lv1482@gmail.com

     

    They also have a blog - https://lessonsfrommatthew.com/

    Rylee - 3.28.08
    Malakai - 8.3.09
    Ezra - 12.1.11 ASD
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    SnowflakeBride06SnowflakeBride06 member
    Thank you so much! I will be in touch!


     6/09 right tube loss (fallopian torsion) 12/09 BFP #1 (DD born 9/10)
    8/12 dx Lupus (ANA+/APA-), 12/12 BFP #2  natural m/c 6w 2d 
    TTC#2  since 9/12  50mg Clomid/Ovidrel IUI #1 Beta 10/4=BFN
                                 50mg Clomid/Ovidrel IUI #2 Beta 11/1= BFN
                                      100 mg Clomid/Ovidrel IUI #3 Beta 12/26=BFFN
    100 mg Clomid/Ovidrel IUI #4 Beta 2/14= BFFN
    Took a LONG Break
    Lots of Luck and Love BFPB for life KOFMKG
    Report Reply
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    kmtroupekmtroupe

    SnowflakeBride06, I was wondering how your step-sister-in-law's child with CHARGE is doing. I am friends with lvisser and am the author of Lessons from the Book of Matthew, our family's journey of raising a special needs son with CHARGE Syndrome. If we can be of any help, even just to talk, we would be glad to do so. There is contact information on our blog or contact me through here...we are registered on The Bump.

    Kevin

    Lesson from Matthew

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