Remembrance walk shares teen's message of perseverance
and raises money to help others
Even in the final days of her life, Amanda Perrotta did her best to record in her journal what it was like to be diagnosed with mitochondrial disease as a way to share with anyone who read it that there are still positives in life even if you're suffering from a disease.
Her parents work hard to share that message by holding remembrance walks in her name, the second of which is scheduled for Saturday, Sept. 18, and publishing her journal, titled Amazing Amanda: My Journey Through Mito.
Her mother, Jackie, said she has yet to finish the book herself.
"We found the personal journal after she passed, and in her personal journal she left notes for everybody," said Jackie. "In her personal journal it said, 'When somebody finds this, and I know they will, I would like this turned into a book so it can help others, educate them about mito and also teach them how to live life to the fullest.'"
Amanda died in 2008 at age 16.
After the family held the first walk in 2009, in which they raised nearly $20,000, Amanda's Journey turned into a foundation and a nonprofit organization. The foundation paid for the second annual Mitochondrial Disease Awareness Day at the Oakwood Christian School in Troy in June, and has provided medical equipment and testing equipment for families in need.
All of these achievements were paid for with the money raised from the remembrance walk, which Jackie said would have been impossible without the support from the local community.
"Without people coming to this walk, we at the foundation would not be able to do this," she said. "This is our one and only fundraiser."
The foundation will help families in need of assistance in paying for medical bills, tests, and they'll even help if a family is behind on taxes. Jackie said that all the money raised stays local, and the foundation is meant to be there for anyone who is suffering a disease, not just mitochondrial illnesses.