About Me: Female, 9, norwich, United Kingdom, member since Sep 2010
DAISYS BLOG dottydaisy.blogspot.com
I'm the mother of Daisy,born 13/4/2010. Daisy has Adams Oliver Syndrome, ACC, large Skull Defect, ASD, Pulmonary Artiery Sterioses, A
[More]pnea (stops breathing), missing toes, abnormal Hands/Feet.
Basically Daisy was born with 15cmx15cm of skin missing on the top of her head, under this was also a skull defect, meaning the skull approx the same size is missing to, therefore she has no skin, or skull protection. She also was losing CSF (spine and head fluid) We have spent many months at Great Ormond street,and every day is a stuggle. Daisy is a happy little girl, who smiles alot.
"hi,my daughter Daisy,4months was born with ACC(15cmx15cm),and a large skull defect, underneath ACC, she previously had CSF leakage,Thus infection being mager consern. Dressing need to be applied without presure,partner and I are changing..."
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