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Amanda's Journey continues

It is the Perrottas way of giving back to those who had helped them when they were struggling to pay for Amanda's bills. They were helped out by the Thomas Patrick Morrison Foundation, which was created in honor of a boy who died of a mitochondrial disorder almost three months after being born.

"We saw how much they took the stress off of us," said Jackie. "So that's why we're trying to give back to the community, too."

Karen DuJack, a family friend and treasurer of Amanda's Journey, said she remembered when the family had struggled to make ends meet, even forcing Jackie to sell her daycare called Jack and Jill. As an example of their perseverance, when the family couldn't afford to purchase a service dog, they bought a puppy and Amanda trained the dog herself.

DuJack said she loved seeing the smile on Amanda's face when she would bring over the animals from her farm.

"It would light up her face," she said. "Animals were her special thing."

She recalled when the family found the journals underneath her bed and mentioned that it was hard for them to go through the writings.

The possibility of Amanda dying was never discussed in her family, but the all knew the dire prognosis of her illness. It became clear to Jackie that Amanda was pondering of her own death after reading through journal entries.

From Aug. 11, 2008:

Something you never want to know at 16 years of age:

You know how those times when you don't want to answer a question but you have no choice? Well this is one of those times.

I know someone's going to read this sometime later, even if I'm 100 or 30. I'm watching a show right now and a man had to go on a vent. My mom asked me would I ever want to live on one of those, I answered, "I don't know, I'm 16." But when you have a life-threatening disease, you have to think about these things because you never know. So here's my answer:

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