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Daughter with CFC syndrome

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kiesha
kiesha Community member Posts: 1 Listener
Hi I'm a parent to a 7 year old girl with a extremely rare condition (CFC syndrome) wanting to communicate with other parents 

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  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,665 Disability Gamechanger
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    Hi @kiesha
    welcome to the community.  Do you want to tell us a bit more about yourself and your daughter? What does CFC syndrome entail?


    Scope
    Senior online community officer
  • Blue Frog
    Blue Frog Community member Posts: 358 Pioneering
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    Hi @kiesha welcome to the community,  we are still going through the genetic testing stage and there is a possibility my little girl (4) might have something really rare too.  

    With some of these conditions being so incredibly rare, the chances of meeting another family affected by something like CFC are tiny, but we may be experiencing similar issues and this is a great place to chat to others x  


  • Alex
    Alex Posts: 1,304 Pioneering
    edited March 2017
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    Hi @Kiesha,

    How are you? Would love to know more about CFC syndrome, it's not something I've come across before.
  • lucycraven95
    lucycraven95 Community member Posts: 2 Listener
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    Hi @kiesha

    my daughter has recently been diagnosed with CFC syndrome. How are you and your daughter doing? 
    Amelia is 2 and half, she was just diagnosed after her second birthday this year with the genetic disorder. 
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