Daughter with CFC syndrome

kiesha
kiesha Online Community Member Posts: 1 Listener
edited March 2017 in Families 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 

Comments

  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,602 Championing
    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?


  • Blue Frog
    Blue Frog Online Community Member Posts: 352 Empowering
    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 Scope Posts: 1,281 Pioneering
    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.
  • lucycraven95
    lucycraven95 Online Community Member Posts: 2 Listener
    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. 
  • Superlamb
    Superlamb Online Community Member Posts: 2 Listener

    Wondering if this old thread is still active - my 4 year old has just been diagnosed with CFC and given how rare it is, I am not sure if or how I can find other families :)

  • chiarieds
    chiarieds Online Community Member Posts: 16,672 Championing

    Hi @Superlamb - & welcome to the community. I'm sure you'll find this a very supportive community as we have many parents who have children that are facing other genetic disorders.

    The charity Contact says that there's a support group for children with Costello syndrome as well as CFC syndrome here in the UK, but given how rare it is I'll also give a link to the International CFC syndrome website:

    https://www.costellokids.com/

    https://www.cfcsyndrome.org/

    I hope you can contact other families, & always feel welcome to chat here too 😊

  • Annie_Scope
    Annie_Scope Posts: 40 Scope Online Community Children and Family Specialists
    edited November 28

    Hi @Superlamb

    Welcome to the community and thank you for your post.

    It can be a huge shock to get a diagnosis for your child, and often hard to find the right information to support you as a family. I don't have a lot of knowledge of CFC but there is a great charity called Contact, and they have a lot of information and advice for parents - Cardiofaciocutaneous syndrome | Contact. They recommend CostelloKids a registered charity in England and Wales, who offer information and support groups to families affected by Costello Syndrome or CFC Syndrome. 

    You may find the CFC website helpful too Cardio Facio Cutaneous syndrome International, they also have a family support network.

    Take care and keep reaching out to the community.

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