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Daughter with CFC syndrome

kieshakiesha Posts: 1Member Listener
edited March 2017 in Parents and carers
Hi I'm a parent to a 7 year old girl with a extremely rare condition (CFC syndrome) wanting to communicate with other parents 


  • Sam_ScopeSam_Scope Posts: 7,732Member Disability Gamechanger
    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?

    Senior online community officer
  • Blue FrogBlue Frog Posts: 373Member Pioneering
    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  

  • AlexAlex Posts: 1,325Scope Team Scope community team
    edited March 2017
    Hi @Kiesha,

    How are you? Would love to know more about CFC syndrome, it's not something I've come across before.
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