Eva Scotto, age 9 Albany, NY
Eva was diagnosed with Mitochondrial Disease, an inherited chronic incurable disease. It effects her autonomic nervous system further causing her a gastrointestinal disorder and is legally blind. Further symptoms of this disease include poor growth, loss of muscle coordination, muscle weakness, hearing problems, learning disabilities, heart disease, liver disease, kidney disease, respiratory disorders, neurological problems and dementia.
Eva was born 4 months premature on 12/4/07, weighing just 18 ounces. Eva is currently unable to attend school. She alternates periods where she is fed via IV or through a tube in her intestines. She will receive physical and occupational therapy when she is feeling well enough. She receives palliative care at Albany Medical Center via a team of medical staff. She has undergone 13 surgeries and 30 hospitalizations. Eva does not tolerate the heat or cold very well and has issues regulating her vital signs. She tires easily and is totally incontinent.
Some equipment Eva requires to keep her stable include: Feeding pump, nebulizer, cough assist machine, chest percussion therapy vest, oxygen compressor, G and J tubes.
Mom said "she is into Mario, Luigi and Minions. Loves hand held devices as her vision is limited. We take each day for what it is....A Blessing. For the most part she is a happy girl but she has fear which causes outbursts at times when we go out."
