When 16-year-old Amanda Perrotta could no longer eat regular food without assistance, it was OK because she could still suck on ice cream. When she could no longer walk, it was OK because she could still get around with the help of a wheelchair.
For every negative turn in Perrotta's life, the teen, who suffered from mitochondrial disease, still found a positive. Her family has found a way to continue that legacy by educating the community about the rare disease that killed their loved one Nov. 12, 2008.
On Sept. 13, Amanda's Journey Fund, the foundation set up by Perotta's family, will be holding its first Remembrance Walk in honor of Perrotta, who bravely battled mitochondrial disease over the years.
Karen DuJack, a close family friend for the past 10 years, is helping organize the walk.
We're hoping this will be a family event, and our goal is to raise money for three different organizations, said DuJack.
The organizations are the Thomas Patrick Morrison Foundation, a foundation that provides financial grants to the families of children suffering from rare diseases; an organization at Albany Medical Center that helps pay for meals of children in the hospital; and Amanda's Journey, the foundation set up in honor of Perrotta.
The bulk of the money, according to DuJack, will go to the first two organizations.
Perrotta's mother, Jacqueline, said her daughter had been sick since birth, though she was not diagnosed with mitochondrial disease until she was 14.
Mitochondrial disease affects the way the body breaks down food and converts it into energy. Slowly, a person with mitochondrial disease begins to lose function of his or her muscles and organs and can experience seizures.
When Perrotta was diagnosed, neither she nor her family knew much about it.
"Back then, it was very rare," said Jacqueline, who said that the only thing the family did know was that most people who are diagnosed with the disease do not live past their teenage years.