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.