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Member details for okerri

Last updated: 21 Sep 2011
 

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okerri
Family type: Two parent family
Siblings: 2
Disabled siblings: 0
Jun 2006 Female
Relationship: Mother
Conditions: Cardiofaciocutaneous syndrome (14)
Brief summary: I am a mother of a little girl who is 5 years old Last year she was diagnosed with CFC syndrome I had never heard of this rare condition and would like to get in contact with parents of other children who have this disease condition

Location: Ireland (Republic of)
Languages spoken: english
Member since: 21 Sep 2011
Full story:
My daughter is a very happy outgoing little girl. She started mainstream school at the beginning of september and is doing very well so far. She receives extra help at school through resource teaching. She has been diagnosed with a mild intellectual disability. Medically, she is fit and healthy. A heart murmur (asd) was detected when she was 6 weeks old. Fortunately this resolved itself by the time she was two years old. She was born with a ptosis (lazy eyelid). Apart from the ptosis, her eyesight is not great but she wears glasses to correct her vision. Last year she had surgery to tighten the muscles of the eyelid and this was very successful. She suffers from keritosis pilaris which inhibits hair growth. However recently her hair growth has improved especially with the help of the sun when we were lucky enough to get it during the summer!

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