Special Needs

Friend's daughter with Charge Syndrome

Hi Ladies! 

I want to start of by saying you are all incredible women. I have a family member with angelman syndrome, and work closely with the special needs population and their families. 

 A close friend of mine just let me know her daughter has Charge Syndrome. She has been in and out of hospitals, but I never knew what the diagnosis was. I can tell she feels alone, and I found TB extremely helpful throughout my TTC struggles. I would love for her to receive the same insight and support that I have had from this site. I wanted to first find out if women on this board have children with CS as well. Before I introduce her to the idea of online forums, I want to make sure I find a site that has people who can share their experiences and recommendation who dealt with CS. 

 Thank you ladies! 

 

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      BFP #1: 7/18/12, M/C 8/6/12 @6weeks  Missing our April Angel
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Re: Friend's daughter with Charge Syndrome

  • Hi, I don't post much anymore, but I just randomly decided to check this board tonight!  My DS has probable CHARGE.  He is 15 months old.  Is she on Facebook at all?  There is a very active CHARGE group on there and there is also a CHARGE group for parents of infants and toddlers.  The ladies on there are awesome!  Honestly, even if she doesn't have FB, it might be worth it for her to sign up for an account just to join these groups.  They are absolutely the best source of information I have found.  There is even member named Meg Hefner (a geneticist), who is the #1 expert in CHARGE genetics in the US.  I hope this helps!  Please tell her that, although it seems scary and isolating, she is definitely not alone.

    https://www.facebook.com/#!/groups/chargesyndrome/

    https://www.facebook.com/#!/groups/124073637717566/

    K, born 05/06/10 B, born with a few surprises 07/20/11  

    image
  • imageheedy07:

    Hi, I don't post much anymore, but I just randomly decided to check this board tonight!  My DS has probable CHARGE.  He is 15 months old.  Is she on Facebook at all?  There is a very active CHARGE group on there and there is also a CHARGE group for parents of infants and toddlers.  The ladies on there are awesome!  Honestly, even if she doesn't have FB, it might be worth it for her to sign up for an account just to join these groups.  They are absolutely the best source of information I have found.  There is even member named Meg Hefner (a geneticist), who is the #1 expert in CHARGE genetics in the US.  I hope this helps!  Please tell her that, although it seems scary and isolating, she is definitely not alone.

    https://www.facebook.com/#!/groups/chargesyndrome/

    https://www.facebook.com/#!/groups/124073637717566/

     

    thank you!! i will definitely pass the info along!! 

    imageimagephoto proudEPer2.gif
          BFP #1: 7/18/12, M/C 8/6/12 @6weeks  Missing our April Angel
    Baby Birthday Ticker Ticker
                                           Image and video hosting by TinyPic
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