Things coming to an end

OHey everyone! 

Coming to ya from my study hall (with horrible camera quality) 

So first of all I dyed my hair again 

New color!! 

And yesterday (Wednesday = Infusion Day) I got some pretty great news! Our insurance company is almost positive that they will approve for me to get Vimizim at home!! Woo! So if all is well and goes the way we are hoping I will be getting infusions at home in about a month! I can't believe it has been two months since the FDA approved Vimizim ( I will never tire of saying that name) and 6 months since I testified! It seems like just yesterday Mr. Earley and I were starting to write my speech and I had my mom give me her perspective and some ideas and she sent me whole paragraphs. But Mr. Earley says that I wrote that whole speech by myself! It was live casted over the Internet and Mr. Earley got to watch it! My dad and I were on a plane ride home on Valentines Day about to take off when we got the news, I started crying and people stared at my dad like "What did you do to that poor little girl?" Well anyway I should get going my phone battery is running low!! 

Sarah Van Orden

Bullying!

Hi everyone!

I'm typing today's post while in my bed about something that happened yesterday and for many years. I have been a victim of bullying for as long as I can remember. I thought my peers were now mature enough to handle having a disabled person with an intellegence level equivalent (or higher in some cases) to their own. Yesterday my peers had to prove me wrong. In history we were having a debate on healthcare and our government providing it for us, so I spoke my mind (as usual in that class, history is my favorite subject) about how there should be government funded healthcare but they need to be stricter about who is on there and I mentioned that when I was in Elementary school, I couldn't get my powerchair because our insurance had been spending way too much on people who didn't actually need it (they said it was because I had a mobility scooter, which I couldn't use because my hands were getting worse) and these four girls (one of which I thought was nice and mature enough because she had known me since first grade) were sniggering at every word I said! Like we were back in Elementary school! So my aid told the teacher and is now taking care of it with our Dean of students. So then I got home and I was crying because I had pride in the maturity of these people and they completely let me down. And my mom said that was not considered bullying, only aggressiveness whether physical or verbal, is bullying. And I know more people out there feel that way but the dictionary definition of bully is: A quarrelsome individual who intimidates others. Which I also feel is untrue, to me and many others, bullying is simply people making you feel different and/or infererior, the worst bullying I ever endured was in the sixth grade. Our schools just merged, and all the Elementary kids were together for the first time and this girl I never spoke to before kept staring at me with like daggers in her eyes and just kept gossiping about me and being mean, I would come home everyday crying, because I was without any allies. One day it got really out of hand when I was in class and we were talking about bullying, I said I had been bullied before and I thought it was wrong to bully someone just because of their differences well the girl came over to my desk after class and called me a hypocrite and racist. That upset me enough to go to our guidance counsler who called in the other girl who said I started bullying her at the beginning of the year, and everytime she'd accuse me of something I hadn't done, Id say I don't believe in that, so we were in science and she sat behind me and she kept saying, "I don't believe in doing that, its beyond my beliefs" in a mocking tone. That girl never let up, until about a week before she moved, Freshman year. This girl just kept staring daggers at me throughout the hallways! People say "Sticks and Stones make break my bones but words will never hurt me" which through my experiences I know it's wrong. If somebody is making you feel inferior, you can talk to me. 

"Nobody can make you feel inferior without your consent" ~ Eleanor Roosevelt 

Love you all! 

Sarah 

Happy Birthday/San Diego

Hi everyone!


First of all, this blog turned one year old on April 9th 2014! Wow hard to believe it! It seems like just yesterday my friend Kianna inspired me to blog! So now that we are 1 have a piece of this birthday cake I found on Google!

Now, I promised I would blog about my trip to San Diego, and I don't break promises. 

So, San Diego was my first time flying with someone who is not my mom (I went with my dad). So Tuesday we were supposed to fly out to Charlotte and get a connection to San Diego, it snowed in Charlotte so instead, my dad and I got picked up via a limo around 3:30am and took a direct flight from Philly to San Diego. 

The view outside our window

Daddy <3

Hey! 

Pizza!

We went on a lunch date and my dad got this salad which was bigger than me

Coming from this brutal winter, I loved the palm trees

I would not want that job....

Such a tall beautiful building

So pretty!

Sign in the hotel

This is pretty cool! 

Doctor Harmatz, the doctor who started the company on MPS research and I

Doctor Harmatz, the doctor who started the company on MPS research my dad and I

Doctor Harmatz, the doctor who started the company on MPS research and I

The BioMarin booth had some nice white leather couches to lounge on

The top of the hotel at night

Again

Here's the set up

All the speakers 

My new friend Kendra and I (Kendra has a different MPS, MPS VI)

My dad, Kendra and I

My dad, Kendra, Kendra's mom and I

The panel!

This was on the screen as I spoke

Panelllllll

Speakers

Speakers

After this, we had dinner and flew back the next day. 

Hey everyone!

It has been absolutely forever! You would not believe the 1 or 2 months I have had! First of all, early in February, my family and I found out that my maternal grandfather "Poppy" Tex died of a heart attack, we were very close to him when I was young so that was hard for me to cope with. The next thing was I dyed my hair!

At first it was a very slight red

Then after that I went to San Diego to speak at a genetics conference (which will be its own post in itself soon) then a couple weeks ago I dyed my hair again

Now its a very drastic little mermaid like red

Now on to my past week....

So last Tuesday, I felt okay, normal, but had a bit of a sore throat, which I thought nothing of, until I got to infusion on Wednesday and had a nurse listen to my lungs and gasp as she listened, which scared me. It was just because there was wheezing. So my doctor and nurses made a decision to not do infusion. So they gave me Albutral and sent me on my way home. 

This is what an Albutral treatment looks like, in case anyone is curious.

I stayed home Wednesday, Thursday, and Friday. On Saturday, I felt the worst, I was tired, Oh so congested and had a horrible headache. So, my mom took me to my pediatrician to see whats up. They tested me for strep (they swab the back of your throat, I gagged), they tested me for the flu (shoving a q tip up your nasal canal to the spot where your nose and forehead met, I cried and screamed) after both came back negative, we had to go to the local emergency room (I have never been to an emergency room in my life) and get my lungs x-rayed to see if I had pneumonia, yet again, negative. So Saturday was just filled with me on the couch watching movies after being prescribed amoxicillin  (finally got to see Monster's University, it was so cute!) then yesterday I still did not feel good so I laid down and watched movies again (I watched Saving Mr. Banks, Frozen and Wreck-it-Ralph, I love and recommend all three), then I went to sleep at 8:30, had a HUGE coughing fit in the night last night and was woken by it at 12:30 and couldn't fall back to sleep until 3:30, luckily it was pre-determined that I would stay home and was woken by my dad leaving for work at 7:30. I am feeling a bit better, hopefully tomorrow I will go to school (I will if A) No fever B ) I don't wake up in the middle of the night C) My throat feels decent ) So here's hoping!

Sincerely,

Sarah

Hey everyone, I promise you all I will write a good long post soon but as of right now all y'all need to know is that Vimizim (My infusion) has officially been approved by the FDA 

Rant time!

Hey everyone!


Its me, I am feeling down in the dumps today, and got into an argument with two of my friends based on how I am handling things, so I feel the need to rant a little. So here goes. Just going to flat out say something I don't say often: I just wish I wasn't different. So it all started when I was randomly thinking about people being judgemental.

I was feeling the need to rant about people staring and how it feels.And, apparently my friends did not like the way I handle it and both kinda attacked me for it. They both told me I need to be nice to everyone (I used to, gave up on that when people started walking all over me) I realized I can't be nice to everyone because there was a rule presented to me when I was young and I wholeheartedly still believe in it "Treat Others the Way you want to be treated" So I am nice to people if they are nice to me, I am mean to people who are mean to me, that what that rule means and I intend to follow it. I wish people would consider what I have been through before telling me what to do. Now I shall leave you with a song that makes me smile everytime I hear it

There's some things that I regret,
Some words I wish had gone unsaid,
Some starts,
That had some bitter endings,
Been some bad times I've been through,
Damage I cannot undo,
Some things,
I wish I could do all all over again,
But it don't really matter,
Life gets that much harder,
It makes you that much stronger,
Oh, some pages turned,
Some bridges burned,
But there were,
Lessons learned.


And every tear that had to fall from my eyes,
Everyday I wondered how I'd get through the night,
Every change, life has thrown me,
I'm thankful, for every break in my heart,
I'm grateful, for every scar,
Some pages turned,
Some bridges burned,
But there were lessons learned.

There's mistakes that I have made,
Some chances I just threw away,
Some roads,
I never should've taken,
Been some signs I didn't see,
Hearts that I hurt needlessly,
Some wounds,
That I wish I could have one more chance to mend,
But it don't make no difference,
The past can't be rewritten,
You get the life you're given,
Oh, some pages turned,
Some bridges burned,
But there were,
Lessons learned.


And every tear that had to fall from my eyes,
Everyday I wondered how I'd get through the night,
Every change, life has thrown me,
I'm thankful, for every break in my heart,
I'm grateful, for every scar,
Some pages turned,
Some bridges burned,
But there were lessons learned.

And all the things that break you,
Are all the things that make you strong,
You can't change the past,
Cause it's gone,
And you just gotta move on,
Because it's all,
Lessons learned.


And every tear that had to fall from my eyes,
Everyday I wondered how I'd get through the night,
Every change, life has thrown me,
I'm thankful, for every break in my heart,
I'm grateful, for every scar,
Some pages turned,
Some bridges burned,
But there were lessons learned,
Oh, some pages turned,
Some bridges burned,
But there were lessons learned,
Lessons learned.

Why Ellen?

Hello everyone!


As I am incredibly busy and slowly becoming famous (Weird isn't it? I'm 16 and I am inspiring, want me to go on a shopping spree or do something your average 16 year old girl would do? Too bad, I like my books and brain too much) I find I need to separate time for myself and my blogging, at last my dreams of using my story to inspire and help others is coming true. I am one of 300 people with my disease in the world and I seem to be the one chosen to spread awareness. I am very blessed that I have been given this job, and I bet you won't find someone nearly as passionate as I am for the job. And if you are one of the people I inspire, I'm sorry, I can't be that good of an inspiration, there are others that would do a better job.

Now, recently I have been trying to get on the Ellen Degeneres Show, to get the awareness national, or even international! We have over 600 signatures as of 8:21, and no contact from the Ellen show. So, why Ellen? Well,  I have loved Ellen since I was 6 or 7 years old and I heard her as Dory the Fish, I since have adopted her motto for my everyday life "Just Keep Swimming".

Along with the petiton and Facebook page, I was in the local newspaper (You can read the article here: http://lancasteronline.com/article/local/933757_Manheim-Township-girl--born-with-Morquio-Syndrome--hopes-to-tell-her-story-on--The-Ellen-DeGeneres-Show-.htmlhttp://lancasteronline.com/article/local/933757_Manheim-Township-girl--born-with-Morquio-Syndrome--hopes-to-tell-her-story-on--The-Ellen-DeGeneres-Show-.html ) and today a letter to the editor came in that I personally would like to address. It reads: I read the article in the Sunday News (Dec. 22) about Sarah Van Orden and her quest to be a guest on "The Ellen DeGeneres Show."

Sarah truly seems to be an amazing teenager who's been given almost insurmountable odds in life and facing them with courage and optimism far beyond her years. Being in a wheelchair myself, I'm slightly aware of the hurdles to overcome, but certainly not on the level that Sarah faces in her daily life.

Toward the end of the article I read with tears about her difficulty with the one door at school and not being able to open it without help. I could not believe what I was reading when it stated that, on some days, she has to sit in the rain because other students walk right by her and don't help her. Any student who is guilty of this awful behavior should be ashamed.

Sarah's parents must be very proud of her and the way in which she's living her life. I'm sure her wonderful attitude takes an enormous amount of strength in facing each day in such a positive way. And I'm also sure she's very thankful for her best friend and supporter and her efforts to help make Sarah's dream come true.

Hopefully, with enough social media coverage, Ellen DeGeneres will become aware of this project and the arrangements will be made for Sarah and her parents to travel to Los Angeles for the big event. Being Ellen's guest would be an awesome happening for a very deserving young person. We will all be waiting with much anticipation for the announcement of the date the show will air.

Connie A. Kirchner

Well, first of all, Thank you Connie and second, my school is thinking that this is worse than it actually is so I thought I would mention that I LOVE school, its just the one door and people assuming I am mentally handicapped that I don't like about Township, a majority of the teachers are sweet and I have had very few problems with the staff but rather with the students, as they are just like all other teens. I have an aid who doesn't start when I first get to school, but I love her and can't even fathom life without her. Well, I have to go, relax a bit, I have an interview after school tomorrow for the school news! 

Just Keep Swimming, God Bless,

Sarah Van Orden