Este documento resume la vida de Orly desde su nacimiento en Camagüey, Cuba en 1959 hasta 2009. Detalla sus múltiples anomalías congénitas incluyendo una deformidad cervical y una hidrocefalia arrestada. Fue tratada en hospitales de Boston y Moscú. Vivió varios años en Cuba y Estados Unidos con familiares. Recibió educación y atención especializada. A pesar de sus limitaciones físicas, Orly vive centrada en su familia y amigos.
10. Junio de 1960 - Orly va al Children’s Hospital en Boston
11. “ The first problem was the obvious deformity of the cervical spine with abnormally fused vertebrae and a widened vertebral canal……limitation of motion of the left shoulder due to Sprengel’s deformity.…… the size of the child’s head and the extremely large anterior fontanel ….the intracranial pressure is normal and if hydrocephalus has been present at all, it has now arrested itself.…an intravenous pyelogram was performed and shows an absent kidney.” “ an active hydrocephalus in the past which is arrested at this time; multiple congenital abnormalities and maybe more which have not presented themselves as yet; and the mental development of the child is still in doubt” . . . . ……… .“sometime nearer the age of five years, surgery should be performed to free the left scapula……we were most interested in this unusual child….in view of the multiple congenital anomalies present, his prognosis should be guarded, but hopeful. I have told the parents that we have no assurance that subsequent children will have any congenital anomalies and have encouraged them to proceed with the raising of a family” June 28, 1960, Children’s Hospital, Boston