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.
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:
If I was put on one, please let me be on one only if they say I’ll get better. If they say I won’t get better then please let me have the pleasure of finally getting to know God.
I know that it would be very hard for all of you but I did my job here on earth and it’s time for me to leave.
` Amanda B+
The maturity that came across in her writing surprised both DuJack and Amanda’s family. Her writing skills also impressed Jackie since Amanda was diagnosed with pervasive developmental disorder, which is on the spectrum of autism, and then Asperger’s as she got older.
`In some ways she was very much a kid,` DuJack said. `Going through everything she went through matured her.`
The upcoming walk for Amanda’s Journey will further the mission Amanda set out to accomplish by raising awareness and educating people about the disease. This year attendees will be able to win dinner certificates and other giveaways. With a $50 donation, participants will get a T-shirt with a quote from the book and a singing performance by Amanda’s sister Carolyn, who Amanda always wished had tried out for the show `American Idol.`
The book is available through Amazon.com and Amanda’sjourney.org for $25. Part of the proceeds go to the United Mitochondrial Disease Foundation.
The walk will take place 10 a.m.-2 p.m. Sept. 18 at The Crossings in Colonie with live entertainment and guest speakers. For information call 279-4327. A portion of the money raised will go to the UMDF, the third annual Mitochondrial Awareness Day, Thomas Patrick Morrison Foundation and Amanda’s Journey Foundation.
Amanda and her mother had a special saying: `I love you to the moon and back and more than life.`
The night Amanda died, Jackie said she walked over to the window where she saw a light coming through.
`Oh my God, look at the moon,` she exclaimed.
When she turned back, she realized Amanda had stopped breathing.
From Aug. 21, 2008:
Why I started this journal:
I started this journal because eventually I want my journal to be turned into a book. I might not be able to do it in my lifetime, but I am hoping when someone else comes across this journal they would want to help me teach all the lessons and teaching others and help me to get through things.
I really want to help teach everyone how they should live their lives with love and to teach everyone to live their lives without fear, regret or without wishing that God didn’t put you on the wrong road.
I want people to change the world into a much better place where everyone lives like there’s no tomorrow.
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