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CHARGE Syndrome

  • 14-11-2005 10:34pm
    #1
    MrMagoo
    Registered Users, Registered Users 2 Posts: 72 ✭✭


    Hi,

    Just wondering if anyone has or knows someone with children with CHARGE syndrome. I know the ins and outs of it from the web and doctors etc. I have a daughter with the condition but as its rare, its very hard to find many people to discuss the condition with.

    Any help/guidance appreciated :)


Comments

  • #2
    Mrs Charge
    Closed Accounts Posts: 1 ✭Mrs Charge


    Hi Mr Magoo,

    I have an eleven month old daughter that has been diagnosed with Charge. I haven't come across anybody with this condition. Some of the medical profession don't even know about it, ie public health nurse. We live in Dublin and attend Crumlin and the physio says they would see 2-3 new cases a year with this syndrome, but then they are Crumlin. My daughter is a very happy baby but trying to put weight on her has been a battle.
    Please contact me if you would like to talk more through a private e-mail.
    Best of luck.


  • #3
    MrMagoo
    Registered Users, Registered Users 2 Posts: 72 ✭✭MrMagoo


    Mrs Charge,

    I sent you a private mail :)


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