The story of Alexia
Alexia, or as we call her Lexi, suffers from combined oxidative phosphorylation disorder, a rare form of mitochondrial disease. Her super hero name is Lexinator as we tell her for every hospitalization that her mitochondria need recharging and the doctors want your super powers! The disease is a result of an abnormality in the mitochondria, the part of the cell that produces energy responsible for all organ function. The syndrome manifests itself differently in each patient; in Lexi’s case, while still in utero she was found to have hydrocephalus, or a buildup of fluid in the cavities of the brain, as well as an absence of the corpus callosum, the part of the brain that permits communication between the two hemispheres. Lexi was also born with hemiplegia, failure to thrive, as well as feeding difficulties, seizures, connective tissue disorder and developmental delays. She has also developed conditions that affect her liver, her heart, and numerous other organs. She has spent much of her life in hospitals undergoing tests and being treated forvarious ailments. Lexi has a serious illness, but when she is feeling well, she is anything but sickly. She is spry, vivacious, rambunctious, outgoing, engaging, playful and upbeat. It took 5 years to receive a diagnosis, passed along from specialist to specialist  and we still have yet to determine the genetic defect associated with her disease. There is currently no cure for her disease and every day is an unknown in her world, but we are hopeful that advancements in medicine will allow Lexi to live a full life !Â