Hi, my name is sevinc!

sevinc
sevinc Community Member Posts: 3 Listener
in Start here and say hello!
cfc shndrome 

Comments

  • sevinc
    sevinc Community Member Posts: 3 Listener
    I have a niece having CFC syndrome. She is 18 months old. Is there anyone having the same condition? 

    She can't sit by herself, can't hold anything and can't speak at all. We don't know what to expect... 
  • chiarieds
    chiarieds Community Member Posts: 17,400 Championing
    edited June 2024

    Hi @sevinc - Welcome to the community & thank you for joining. I'm sorry to read about the problems your niece has, & I don't think anyone here at the moment has such a little one, as it seems to be a very rare disorder.
    There doesn't seem to be a UK-based support group, but I've had a look, & found a parent's guide from CFC International (, which may give you some general info.
    See: https://static1.squarespace.com/static/5c7809364d8711fdeaebbccd/t/5d7ec24ce29ef95f64629e2b/1568588368266/CFC-Parent-Guide.pdfI hope you will also get guidance from her Paediatrician, as all children are different, & they will know her best. 

    https://www.cfcsyndrome.org)

  • sevinc
    sevinc Community Member Posts: 3 Listener
    Thank you.
  • chiarieds
    chiarieds Community Member Posts: 17,400 Championing
    @sevinc - You're very welcome. Please do chat here any time, as this is a very friendly & supportive community.
  • Adrian_Scope
    Adrian_Scope Posts: 14,427 Online Community Programme Lead
    Welcome to the community @sevinc. I hope the information above is of use to you. :smile:

Categories