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Title: Kaitlyn's Journey View count: 9988 Rating: 5.0 (27 ratings) Description: Kaitlyn has Hypophosphatasia (soft bones) and a non-specific connective tissue disorder that lies somewhere between Ehlers-Danlos Syndrome (loose joints and "sensitive" skin) and Osteogenesis Imperfecta (brittle bones). She has also been diagnosed with Periventricular Leukomalacia (death of the white matter of the brain from a lack of oxygen at or around the time of birth), very mild Cerebral Palsy, Craniosynostosis (premature closure of one or more of the fibrous joints between the bones of the skull before brain growth is complete) secondary to Hypophosphatasia, and mild bilateral Pelviectasis. It is not uncommon for children with genetic disorders to be predispositioned to other disorders or conditions. We were told by our local Doctors that she would likely never walk and would never be a champion amongst other asinine comments. Needless to say she does in fact walk and is our amazing little champion!!! For more information please click on the links below: http://www.emedicine.com/PED/topic1126.htm http://ghr.nlm.nih.gov/condition=hypophosphatasia http://www.oif.org http://www.ednf.org http://www.northshorelij.com/body.cfm?ID=6409 http://www.ninds.nih.gov/disorders/periventricular_leukomalacia/periventricular_leukomalacia.htm http://www.ninds.nih.gov/disorders/cerebral_palsy/cerebral_palsy.htm http://www.ninds.nih.gov/disorders/craniosynostosis/craniosynostosis.htm Tags: baby, hypophosphatasia, collagen, alteration, periventricular, leukomalacia, chiari, malformation, craniosynostosis, ehlers-danlos, syndrome, osteogenesis, imperfecta, genetic, disorders, kaitlyn, onetruemedia, Author: nefkbbcb |
