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Amanda's Journey Foundation: Amanda's Journal

Before you read these entries...

The following are just a brief sampling of the journal entries of Amanda Perrotta. Before you read these entries you should know that the earliest ones are found at bottom of the page. For a chronological overview, start from there.

Amanda's journals contained errors in spelling, grammar, and punctuation. For the most part, these have not been changed. More journal entries are available on the "Audio" page, and on our flash player.

All are excerpts from "Amazing Amanda: My Journey Through Mito", by Amanda Perrotta with Dave Hart, and copyright is held on all materials.

 

"...you fought the good fight!" - September 8, 2008

An excerpt from "Amazing Amanda: My Journey Through Mito".

“With my disease, I have to fight every second for what I want or need to do. Some friends I’ve made over the years fight harder than I’ll ever do.”

JadenManda.jpg

“When you can’t fight anymore and earn your angel wings, you still won the fight. God just wanted you to arrive a bit earlier then expected because you’re special. So, never worry that you didn’t win, because you fought the good fight!”

Love, Amanda B+

"No matter how hard you want to quit..." - September 3, 2008

An excerpt from "Amazing Amanda: My Journey Through Mito".

“I want to fight this disease right to where I say ‘I can’t do this anymore!’ I’m not planning on doing that anytime soon either… No matter how hard you want to quit, don’t, because God might have so many lessons he has to teach you before you die. So the lesson for today is: never give up no matter how hard it gets.”

Love, Amanda B+

Mand013.jpg

Brave Kids - August 20, 2008

An excerpt from "Amazing Amanda: My Journey Through Mito". Amanda comes back stronger after a brief medically imposed online absence.  

“Hi everyone! It’s Amanda, back in action!”

I’ve been meaning to tell all of you who have an illness about one of my favorite sites called BraveKids. It has a child/teen forum, and it also has an adult one. I’ve been going there for three years now, and that forum is just GREAT! I’ve met so many friends through that. I just wanted to tell you all, in case anyone wants to meet other people who maybe have the same disease or illness as you."

AmandaOnline.jpg "Dreaming101" goes online.

"If you ever start an account there, look me up. I’m “Dreaming101”, and I’ll make sure I hook you up with all of my friends and friends who have the same disease or illness as you. It’s totally child/teen/adult safe, and every forum has Moderators who make sure you’re not saying anything bad etc."

"Here’s the link www.bravekids.org . they also have a number of camps on the site that are very cool!"

Everyone have a B+ day!
Amanda :-) B+ F.R.O.G. (Forever rely on God)

The spirit of this entry is incredible, considering the serious clot issue she was dealing with just the day before she posted it. Once again, Amanda is thinking of others, and sharing a site that helped her tremendously.

    

"We're the lucky ones." - August 15, 2008

An excerpt from "Amazing Amanda: My Journey Through Mito". 

“I’ve had Mito for three years now, and I’m mad sometimes that I have it. I just found out why kids and adults that have done nothing bad in their lives have a life-threatening illness. I’m pretty sure God picked us because we’re the special ones who are going to change the world with our positive attitudes and how we approach things.”

Mand_friend1.jpg

 “We’re the ones who, one day will have to confront the Lord, and the Lord will clap and say ‘Thank you for changing the world and making a difference in people’. We’re the lucky ones.”

Love, Amanda B+

"The little things are the big things." - August 12, 2008

An excerpt from "Amazing Amanda: My Journey Through Mito".

"The #1 thing I really want to teach people is that the smallest things in life are the biggest things. I learned this lesson the hard way."

"I went from Carolyn’s games being little to big in just one year. Last year, I really didn’t care about Carolyn’s basketball games. This year is totally different. I want to go to every single one I can get to. And now that I know that I can’t get to every single one, it hurts because I know that I missed my chance last year and the year before."

CarolynBB2.jpg Carolyn played for Oakwood Christian School.

"So, that is my lesson for today. Even if you don’t like going somewhere or doing something, do it because you never know if that little thing becomes big."

-Amanda B+

Remembering the Taste - July 28, 2008

An excerpt from "Amazing Amanda: My Journey Through Mito".

"Hi All!"

"Yesterday i felt VERYweak, so I didn't do too much, mostly just sleep all day. I was very hungry, though. The way I eat is unique.  I can have just about anything in my mouth and then I spit it out, just to get the taste and remember what each food tasted like."

AmandaCookies.jpg

There came a time when "Mito" robbed Amanda of her ability to swallow. Even after she could no longer eat "regular" food, Amanda continued to bake and cook for others!

Someone 2 Lean On - May 8, 2008

An except from "Amazing Amanda: My Journey Through Mito". Amanda requests materials from her "Mito friends" to create a poster she would title "Someone 2 Lean On".

MandMitoPoster.jpg 

"Hey! I have a small favor for all of my Mito friends. I'm having a fundraiser for UMDF (United Mitochondrial Disease Foundation) and myself. Well, since mostly all of of you can't be here for it (unless you didn't tell me something), i thought of an idea. I'm going to get a HUGE poster board, and if every Mito friend of mine could could email me a picture of themself with their name, how old they are and their favorite color, that would be much appreciated!."

"I'm going to make a Mito Friend poster and put it somewhere for my fundraiser. Please, this would mean sooooo much to me! Even if you don't know me that well, I would love to get to know you and have you be a part on my poster board. This is the only thing i can be in charge of."

Amanda :-) B+

This is typical Amanda. Always eager to tell the story of others with Mito!


"The Cure for Mito is..." - May 7, 2008

An excerpt from "Amazing Amanda: My Journey Through Mito".

"Hi! I have to tell you something. I just though of my own quote today! It will be on the bottom for my quote of the day. I don't know where it came from, but it just appeared in my brain. So i'm quite excited to share it."

"The Cure for Mito is living life." 

Amanda :-) B+

DyeEggs.jpg Da & Amanda color eggs.

Amanda's philosophy expressed succinctly; we are here to live!

 

Medical Trouble & A Visit From A Service Dog - March 7, 2008

An excerpt from "Amazing Amanda: My Journey Through Mito". After a tough night in the hospital, Amanda looks forward to a visit from a service dog who puts his paws together and bows his head when people pray. 

"Last night J-tube got clogged, so i didn't get any of my seizure meds...  i had headaches and auras all night, so i didn't get much sleep...i was tossing and turning all night. I'm just hanging in there for right now. Honor, the dog that prayed for me last week at this time is coming up later, so he'll probably pray again...he's too cute!"

HonorDog.jpg Honor the service dog, and his owner.

" I'm also making birthday presents for my cousins. they're little backpacks, and I'm putting their names on them with glitter and then making like hearts, flowers, crowns, and stars Whatever fits the description of their personalities...lol."

Amanda:-)
B+

Amanda loved animals, especially dogs; service dogs, therapy dogs, pets, and of course her beloved Abby. We see in this entry that even when she was tired or ill she made an effort to do things for others.

         

Amanda & Mike - November 20, 2007

An excerpt from "Amazing Amanda: My Journey Through Mito". A tough day at school turns around with the arrival of a good friend.

"I had a WONDERFUL day at school today! It was one person who made my day special. I've been having a tuff time this year adjusting to the new classroom...my best friend went to another school and I have been having a REALLY hard time adjusting. It's just wierd not having some to talk to all the time during recess."

AmandaMikeS.jpg Mike visits Amanda in the hospital.

"So today I had my private music lesson...when my old teacher knocked on the door and said, "there's a surprise here for you." I looked over and saw my best friend that went to a different school...Mike! I was so excited I just went up to him and hugged him. He got so tall that he's almost taller than me, and he actually lifted me up! I was like, "Whoa, where did those mules come from?" ...lol. It literally made my day, maybe my year! I didn't know if I could take much more school without seeing or talking to Mike...I was on cloud 9 when i got to talk to him in person... Oh how I miss him."

Amanda does not mention it in her journals, but Wildwood School staff will tell you that her friend Mike rarely spoke before he became friends with her. Clearly they had a positive effect on each other!

     

Abby Becomes A Service Dog - November 5, 2007

An excerpt from "Amazing Amanda: My Journey Through Mito".

"OK, quick but exciting update! Today, I received something VERY special! About a month ago I sent in for Abby's Service Dog papers for her to become an official Service Dog. Well, today they came! My mom went home for a while to get some stuff, and i guess it came first class, and she came back with it, and I just am so overwhelmed with just looking at it."

AbbyMand028w1.jpg Abby is this girl's best friend! 

"I can't believe that she's my actual official Service Dog now! I mean, I can bring her everywhere now and she can help me wherever i am. I just wanted to share that with you because most of you have been with me on this adventure...I can't believe I actually accomplished my goal for her. It took a year, but it was worth going to those classes and everyday going over the "stays" and "downs", it was worth every penny now."

-Amanda :-)

Amanda always planned ahead. She made the effort to train Abby so that Abby could be her companion and helper during hospital stays. Abby started out as a stubborn little Cairn Terrier puppy, but a determined Amanda helped mold her into a service dog...and best buddy.   

"And that's all I really need." - October 8, 2006

An excerpt from "Amazing Amanda: My Journey Through Mito".

"OT (occupational therapy) has been going pretty good! I LOVE the scooter rides and going on the swings! The only thing i don't like is the stretches. Last year I was able to do ten without stopping, but this year I'm only able to do 5 and then stop for a break. I guess my legs are getting worse, but it's part of my disease. I can't control it."

AmandaKids166.jpg Amanda happily plays with one of her cousins.

"The one thing that stinks about my disease is that i can't have kids. I'm fine with it now, but when i found out i wasn't (i had a hissy fit!) But I'm OK with it now 'cause my goal is to become an LPN for a children's hospital. And that's all I really need."

 -Amanda :-)

Consider for a moment that the girl who penned this entry was just fourteen years old! In a brief few lines we learn so much about Amanda: her joy in living each day, her love of children, and the fact that she always had goals for the future.

    

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