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Amanda Perrotta (1/10/92 - 11/12/08) was a teenage girl from Rensselaer County, N.Y. whose courageous battle against a rare and life-robbing condition known as Mitochondrial Depletion Syndrome inspired all those who met her, and many who knew of her through the online journal she kept at caringbridge.com .
After her passing Amanda's online and personal journals were published as a book, "Amazing Amanda: My Journey Through Mito". The strength, humor and unfailing positive attitude displayed in her writing continue to inspire others and change lives for the better.
Emily Thompson (a friend of Amanda's who was also battling Mito) said:
"She taught others how to live with a chronic illness in a positive way."
ABOUT THE FOUNDATION
The mission of the Perrotta family, and that of the non-profit Amanda's Journey Foundation is to bring awareness of mitochondrial diseases, and to help children who are battling Mito, and their caregivers.
ABOUT MITOCHONDRIAL DISEASE
"Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common."
|"Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems."|
|"Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection."
The description above is from the United Mitochonrial Disease Foundation website.
Please visit: www.umdf.org for more information.
www.amandasjourney.org is not a medical website. Please seek the council of medical professionals on any health issue.
To order Amanda's book click on "Book / Donations" at the top of the page.
Please check out the Flash Media Player at the top of the screen, just click to hear audio clips about Amanda!