LEXI’S STORY
Alexia Corvino, who is affectionately known as the “Lexinator” to her family and many friends and schoolmates, has lived her entire life with combined oxidative phosphorylation deficiency , a rare form of mitochondrial disease. The disease is the 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 it is affecting multiple mitochondrial complexes with an unknown genetic cause. 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, and developmental delays. She has also developed conditions that affect her liver, her heart, stomach, platelets, eyes and most of her vital organs. She has spent much of her life in hospitals undergoing tests and being treated for various ailments.
Each case is very specific. Lexi’s is one in one million. She potentially could be the only child with her specific case, or one of not even a handful of children. Lexi fights each day for a brighter tomorrow, but still has her bad days. Usually on these days her body has gone into metabolic crisis. This means her ketones rise to dangerous levels, as well as her body which experiences lactic/ metabolic acidosis. When she enters this state she becomes very lethargic and suffers a great deal of pain. There is currently no cure or treatment for mitochondrial disease and life expectancy is childhood to early adolescent.
If you would like to learn more or make a donation to help and support Lexi, click on this link below:
https://www.lexismightofight.org/
