Every thirty minutes, a child is born who will develop mitochondrial disease by the time they turn ten. MITO is genetic and primarily affects children, but it also can develop in adults. Organs, motor function and the nervous system can be affected. It varies widely and is difficult to diagnose. On the next 'Health Link' we’ll examine mitochondrial disease and meet two women whose families have been forever changed by this debilitating and potentially deadly disorder.
GUESTS
Darius Adams, MD
Dr. Darius Adams is a pediatric geneticist at Albany Medical Center specializing in treating infants, children and adolescents with genetic diseases such as mental retardation, chromosomal abnormalities, inherited diseases and metabolic disorders.
Catherine LaFond-Evans
Cathy LaFond-Evans is driven by her love for her children, who all have mitochondrial disease, to offer hope and help to others affected by MITO. Despite the fact that her children displayed multiple problems from birth, it took her family 19 years of daily searching to finally be properly diagnosed with mitochondrial disease in 2001. At that time her children were 17, 18 and 19 years old. After receiving the diagnosis it was yet another several years before they received definitive testing which documented MITO. In July of 2010, her oldest child, Randi, at the age of 28, lost her very brave life-long battle with mitochondrial encephalomyopathy, a rare genetic metabolic disorder that also afflicts Cathy and her other two children. Cathy is the author of the book, “My Children and Mito,” in which she details her family’s struggle with mito. Cathy is founder of Mito Hope and Help based in Warrensburgh, NY.
Jacqueline Perrotta
Jacqueline Perrotta is President of Amanda's Journey Foundation, which she created in 2009 after she and her husband, Louis, lost their daughter Amanda to mitochondrial disease in 2008. Amanda was 16 years old. Jacki is the Capital Region (NY) representative of the United Mitochondrial Disease Foundation. 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. 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.
RESOURCES
Centers for Disease Control and Prevention
The Foundation for Mitochondrial Medicine
The Mitochondrial Medicine Society
The Mitochondria Research Society
National Center for Biotechnology Information
The Thomas Patrick Morrison Foundation
The United Mitochondrial Disease Foundation
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