Hi, my name is sevinc!

sevinc

cfc shndrome 

sevinc

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

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 (https://www.cfcsyndrome.org), which may give you some general info.

See: https://static1.squarespace.com/static/5c7809364d8711fdeaebbccd/t/5d7ec24ce29ef95f64629e2b/1568588368266/CFC-Parent-Guide.pdf

I hope you will also get guidance from her Paediatrician, as all children are different, & they will know her best. 

sevinc

Thank you.

chiarieds

@sevinc - You're very welcome. Please do chat here any time, as this is a very friendly & supportive community.

Adrian_Scope

Welcome to the community @sevinc. I hope the information above is of use to you.