Catherine

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I did not know I had Adams Oliver until my daughter was diagnosed first then genetics diagnosed me. My daughter Catherine was born with cutis aplasia, lesion on her abdomen, missing distal digits of 2, 3, 4, 5 in her right hand. She was totally contracted. The lesion on the top of her skull affected her brain causing calcifications thus leading to seizure disorder impaired cognitive functioning blindness hyper and hypotonia speech impairment. She also had a VSD at birth. It healed on its on. She is very sick and in a hospital bed at home on a feeding pump with 4 seizure meds and a vns. Reflux allergies clonis and osteoporosis are also diagnosis that are being treated. She is happy when she is not sleeping. She does not cry. She is vocal and expressive. She has survived and has a strong will to live. We have no idea where this will take us because her condition is so severe.