Justina Pelletier's Case

Hi everyone,
I'm sure you've heard about the case of Justina Pellentier- a 15-year-old girl who has been held in a hospital for over a year because the doctors believe that Mito does not exist. I'm not going to say anything new- it's obvious from reading the stories and hearing the testimonials of the family that the hospital made the wrong decision. At this point I think the Boston hospital is stuck- not wanting to lose this lawsuit and admit that they were wrong.

Dr. Phil even talked about it today! This is a HUGE deal, guys! If we can spread awareness about this case and tell doctors everywhere that Mito IS real, then Justina will be allowed to go home and all Mito kids and families can live without fear of a situation like this.

Here is Dr. Phil with the full story:

https://www.youtube.com/watch?v=un-fQMTS1xU&feature=youtu.be

There are so many reasons why what this hospital has done is wrong, I'm not even going to go into it. Justina is only getting more sick. PLEASE share this story- spread the word so Justina and other Mito kids can live without fear!

Until next time,

Semper Fidelis

Make-a-Wish Trip Details!!!

Hi everyone! I promised details about my AWESOME Make-a-Wish trip to New York City, but before I knew it, school started... and here we are almost a month later! My mom, my brother, my best friend and I had an AMAZING time! My favorite part was getting a tour of one of the branches of the NYC Public Library. Our tour started an hour before the museum opened- they were so excited to have us because they'd never had a Make-a-Wish kid who wanted to see the library.  I love books, so I was thrilled to see all the relics like Charles Dickens' pen, inkwell, and desk (and his creepy letter opener made from his dead cat's paw).

The first full day we were in New York was my birthday. Make-a-Wish planned a great day: my best friend and I did makeovers at a spa called Red Door. We both got haircuts, and I also got a mani-pedi. We both looked like models- except we weren't Photoshopped! :-) For dinner that night, we went to Ellen's Stardust Diner- a fun restaurant where all the waiters and waitresses are aspiring Broadway stars, so they sing while you eat! The food was great, and it was an all-around fun experience.

Speaking of Broadway, one night we went to an actual Broadway Show- Cinderella! It was very fun. The music was amazing, the acting was exceptional, and thanks to Make-a-Wish the production manager (the man in charge of props) gave us a tour backstage to see the props and learn how some of the effects work!

I love Italian food, and New York City is known for its Italian restaurants. So of course, Italian food had to be a part of the trip. One evening we had dinner at Carmine's. They serve "family style" meals, which means that one entree can feed four people! We had an amazing chicken parmesan, and for dessert we had an equally huge "Titanic"- basically a gigantic banana split. We didn't even finish the Titanic because we were so full from the chicken parmesan. Our last dinner in New York was at a pizza place called Lombardi's. They had great, classic New York pizza!


Make-a-Wish is an amazing organization that gives trips like this to terminally or chronically ill kids and teenagers. You should support them any way you can so they can continue to make kids/ dreams come true!

Until next time,

Semper Fidelis

Happy New Year!

Hi everyone,
This is my last post for 2013! Can you believe it? This year has gone by so quickly!

I just got back from my AWESOME Make-a-Wish trip to New York City! My wish was to go to NYC with my best friend to celebrate my 16th birthday in a way I'll never forget- and Make-a-Wish went above and beyond in every way! Make-a-Wish is an awesome organization, and they deserve your support so they can continue to make the wishes of chronically ill kids and teens come true!!!

Have any of you been on Make-a-Wish trips? I would love to hear about them- let's spread the word about this amazing organization!

I will give details of my trip in my next post- right now I'm tired from my fun-filled, unbelievable wish trip!

Until next time,

Semper Fidelis

The Purpose of This Blog

A few weeks ago, I gave a presentation to the 4th and 5th grade girls in the Sunday school class I help out in. I talked about how to be happy with the way God made you. I used "chronically unique" to illustrate to them how being different is a good thing. Then I realized- that's the purpose of this blog! Why not tell everyone on my blog WHY this blog exists and WHY being different is great? So, without further ado, here is the presentation I gave to the awesome girls in Mrs. Suzanne's class (feel free to ask any questions- I'll answer everything I can!):

I am chronically unique. “Chronic” basically describes something that lasts a long time. It usually refers to an illness that doesn’t go away and just lasts the person’s whole life. We are all “chronically unique” because we have unique personalities and we’ll never have the same personality as someone else. We are stuck with our own identity.

I have an actual chronic illness called Mitochondrial Disease. Mitochondria are little things in your cells that turn the food you eat into energy. When they aren’t working, the body doesn’t have enough energy to do the things that it normally could. In my case, I get tired or sick easily and I have problems with my vision. Despite, in fact even because, of this, I have been able to show God to many people who I would never have met otherwise.

There’s a woman named Joni Earickson Tada who was paralyzed from the neck down as a teen. She has used this for her whole life to reach so many people, whether they have disabilities or not, that she never would have met otherwise. The entire course of her life was changed, and it was all God’s perfect plan.

You have a chronically unique personality. It is just the way God intended you to be. You may wish that you were like someone else, but there can only be one of each person, and you are YOU. God doesn’t have favorites. He has a special plan for you, and your life will never be completely fulfilled if you spend your life wishing that you were someone else.

Until next time,

Semper Fidelis

The Bright Side of Asperger's Syndrome

I have Asperger's Syndrome. While it is technically on the Autism spectrum, it is significantly milder. Because of Asperger's, I tend to take things literally and I sometimes don't understand other people's humor. However, Asperger's is great because I don't have to be interested in what all the other girls my age are interested in. I can spend my time reading great books and researching topics I want to know more about without worrying about how I look or if a certain boy likes me.

Because of Asperger's, my priorities are different than those of other girls my age. Most girls my age know a lot about makeup and whatever boy band or celebrity is currently popular, while I know a lot about outer space and cats. I'm what you might call a "nerd", and I'm proud of it!

Asperger's makes me different, but I like being unique. If you have any questions about Asperger's, feel free to ask me and I'll be happy to answer!

Until next time,

Semper Fidelis

How to Not Get Overheated in the Summer

This is probably overdue- for most of you school has probably already started or is about to start. However, it is still hot, and for people who have trouble staying cool in the summer heat (Mito affects the body's ability to regulate temperature, making the person tired), or anyone at all, here are some ways to not overheat.

1. Stay hydrated. Whatever outdoor thing you're doing, make sure you bring plenty of water. The longer you'll be outside, the more water you should bring. Even if you're swimming and it doesn't feel like you need to drink water, you do.

2. Find shade/air conditioning whenever possible. This is more for people who have something like Mito and get overheated easily, but it's still probably a good idea for anyone. A sunhat with a wide brim can provide shade, and they come in some cute, summer-y colors!

3. If you're at an amusement park, look for mist things and fans. People who build amusement parks usually plan ahead for keeping people cool. There will probably be mists and fans around at a standard amusement park, so keep an eye out for them.

I hope these are helpful! Do you have any ideas? What do you do to stay cool?

Until next time,

Semper Fidelis

DISNEY WORLD!!!! And School...

My school will start one week from today, but for now I'm one last vacation- I'm with my dad and my brother in Florida! We got here yesterday afternoon and went to Downtown Disney. Today we went to Animal Kingdom. On Sunday we're going to Magic Kingdom.

I discovered these cute little figurines called Vinylmation (which is apparently pronounced VINE-l-mation instead of VIN-l-mation). They're all Disney characters, and all of them are shaped so they have Mickey Mouse ears. I found three- a Minnie Mouse with a nerd/back-to-school outfit, a mystery Beauty and the Beast one that turned out to be Belle's horse, and one that was plain white with autographs of different characters on it. They're really cute!

I'm having fun at Disney World, but Disney movies in general are awesome! Aren't those songs great? I get them stuck in my head often!

I am excited for school to be back in. I'm looking forward to having a normal routine again and being a little more organized. My online Chemistry class has already started, and it seems like that won't be too much work. Has your school started yet? I'd like to hear about it!

Until next time,

Semper Fidelis