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.
Despite the illness, which began to rapidly take a toll, Jacqueline said her daughter remained positive and tried to make the most out of her life.
`She made it her mission to stay positive and to educate and work with everybody,` Jacqueline said. `She went out and met other people who had other terminal illnesses and tried to make it her journey.`
Jacqueline said she and her family tried not to talk about the possibility of her daughter dying at a very young age.
`When we already knew the outcome, what do you say to a kid? How do you tell them, ‘You’re going to die.’` Jacqueline said. `We never really discussed death with her until the very, very end.`
After Perrotta died, her family read her journal and realized that just as they thought they were protecting her, she was doing the same, not talking about what she knew about her disease with them.
`No matter what she was hit with, she just said, ‘All right.’ She never complained,` her mother said.
Also in her journal, Perrotta left notes to everyone in her family, including what she wanted them to keep of hers. To her sisters, Carolyn Rose, 19, and Dahea, 18, she left her service dog, Abby, and asked that they make sure to brush Abby’s teeth.
Shortly before dying, Perrotta had a birthday present delivered to her mother ` a Shutterfly photo album she made of her family.
When Perotta took a turn for the worse, she was brought to Albany Medical Center.
`That Monday we had to tell her that it was going to happen sooner than we thought,` said Jacqueline. `She wasn’t scared to die, but she was scared to leave us.`
It was not just her family that she was leaving, but the many friends she had made inside the hospital when she would visit and comfort them as they struggled through their own diseases.
One friend even called her `Amazing Amanda` because no matter what she was enduring and how deep the pain was, it was amazing that she could not only put on a smile, but encourage others to enjoy their lives.
The family is encouraging anyone to attend the Remembrance Walk and is still looking for corporate sponsors. To sponsor the event, or register to walk, visit the Amanda’s Journey Web site at www.amandasjourney.com or call Karen DuJack at 279-4327.
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