Daughter with CFC syndrome
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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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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 -
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
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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. -
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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