Lexi’s MIghTO Fight

This is Lexi. She likes to do things any normal 5-year-old likes to
do: play with her dolls, go to gymnastics, sing, and hug her big
brother, to name a few. However, Lexi’s life is anything but normal.
She has an unknown, rare form of mitochondrial disease. Mitochondrial disease results from failures in the mitochondria of cells, which are responsible for creating energy needed by the body to sustain life and support organ function. It affects everyone differently and impacts
multi-organ systems, leading to chronic ailments. Mitochondrial
disease can be fatal. The doctors have yet to pinpoint exactly which
strain of the disease she has, but it affects her daily. While still
in utero, Lexi’s parents found out she had a brain condition called
hydrocephalus and complete absence of the corpus callosum. She was
born with hemiplegia, failure to thrive, feeding difficulties, seizures, and developmental delays. As time progressed, she often became ill with something new and was hospitalized often. Her many conditions include SIADH, hyponatremia, lactic and metabolic acidosis,
hyperammonemia, malabsorption, rare form of ketonemia/ketosis,
ventriculomegaly, atrial septal defect, liver involvement, septic-optic dysplasia, ideopathic urticaria, isolated 17,20-lyase deficiency, and leukocytosis among others. One hospitalization at a year old left her with an NG tube for 4 months and then a G-tube for feeding for a year. This past year she was unresponsive because her ketones were high, resulting in metabolic crisis with ailments including poor appetite, nausea, vomiting, diarrhea, irritability and behavior changes. Lexi has been working hard with physical and
occupational therapists since birth but is still plagued by chronic bone pain. Yet, in the face of adversity, Lexi has continued to fight and has overcome so many obstacles and moved past many delays.

Lexi has spent much of her life in and out of hospitals undergoing tests and procedures to try and help find a treatment plan. She is currently under the care of many great specialists at Children’s Hospital of Philadelphia in areas such as neurogenetics, metabolism, mitochondrial specialists, gastroenterology, cardiology, and
endocrinology. In May, she will be visiting the National Institute of
Health in Maryland hoping for a specific diagnosis and help with more
possible treatments.

The severity of Lexi’s illnesses and her constant need for care has resulted in numerous medical bills that insurance does not cover.  Having a sick child is extremely stressful enough; her parents should not have to worry about their finances too. Please help in any way you can to help alleviate medical bills and travel expenses, as well as helping Lexi’s parents give her as normal of a life as possible and
allowing her to have great and fun experiences that any child should
have.  If you cannot help financially, please consider sharing this campaign with others to help spread awareness about “Lexi’s MIghTO Fight!”
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Donations

 See top
  • Nicole Sandomenico  
    • $50 
    • 7 mos
  • Lucy Doyle 
    • $100 
    • 7 mos
  • Kelly Kozak  
    • $30 
    • 7 mos
  • Nikki Giandomenico  
    • $15 
    • 7 mos
  • Tori Matson 
    • $100 
    • 19 mos
See all

Organizer and beneficiary

Jill Mauro 
Organizer
Harrison, NY
Melissa Corvino 
Beneficiary
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