The Oscar's Quick Post

Okay I am just doing a fast post today.....the past couple of days were pretty normal.....Friday: I woke up, let my dad out through the garage (he refuses to grab one of the garage door openers), laid around all day watching the first season of Gilmore Girls on DVD......I also got a call from my dad saying that my Grandma Poppy had another stroke during the night...my Uncle Chip noticed that the left side of her face was sagging a little......a very noticeable sign of stroke. She is doing great and she hopes to be out in time for The Oscar's tonight. Saturday: My brother starts playing basketball in his room and wakes me up.....I look at the time and see I'm running late for my "job." So I get ready and ride my scooter down to Seaview Little League and work at the Snack Shack for 4 hours. I then spent the rest of the day watching tv and reading my book for homework. Today: I wake up and realize that its Sunday....my feet still ache from yesterday so I decide to sleep some more...of course my dad calls a second later to ask if I want to go to sugar shack.....that was enough to wake me up!!! He asks me to tell my bro to wake up.....personally it was a mistake....we get to the restaurant and we are waiting.....i tell him about the marathon from a week ago and he isn't very enthusiastic....so i ask him if he watches Grey's Anatomy....I'm not gonna tell you what he said....bottom line he said he wouldn't even like Chandra Wilson because of what my dad did. his reason for not liking even Chandra was my dad made him watch the show when the office came on....that I'm okay with hes upset about a show....but what he said before and elaborated on after was what hurt. first he said that he doesn't care about Chandra or my disorder because what he has to say was more traumatic....after he said....your disorder is nothing compared to this.
I know what your thinking I'm soft i can't take a joke....well for all those people with this disorder imagine every day you see your sibling parents or best friend they dis you and your disorder....if you have just recently been diagnosed then you remember being told your crazy....or that your disorder is lady troubles or that it is nothing and it will go away come back if it gets worse......my brother has said so much about my disorder in what he thinks a joke but it really hurts because to me it says i don't care.....
okay enough about my brother......the Oscars tonight were amazing!!!!! I am glad Meryl Streep got the Award!!!!! oh and little note Meryl in all three wins you wore gold.......WEAR GOLD! okay quick post done!!!! and just like Billy Crystal's opening song this was not done by Martin Scorsese because there was no blood!!!!!
Have a good night!!!!

Internet Rants & Ribbons

Ah Wednesday's......the one day of the week where i have no clue what to do with myself. so i guess i'll blog about the internet. it can be a little weird blogging you never know if anyone reads it...i keep telling my friends to check it out so that they can help me spread the word on mitochondrial disease......but they only seem to be liking the like page on face book and not checking out the blog. on that like page in the info i put both the site and the email i use for the blog but i never know who looks at it...they say the internet makes us able to connect with each other more. but we can't tell if someone is being sarcastic or funny so we could take things meant to be funny the wrong way. and when someone reacts to something they have to type it out with a "lol" or a "=)" emote. we can't see the other persons face...but then again they half solved that problem too.

they invented the web cam...sure we see the other person but then the connection could be bad or if the lighting is in a weird spot the entire screen goes basically black and you can't see much of the other person. or the internet could have a cutout and the call goes dead completely...it can be hard to keep connected...i doubt we have any more than 15 friends that we see on a regular basis out side of work or the family. the internet has basically made us virtual shut ins...we can stay in the house in our pj's for ever...we can know do jobs, shopping, school, bills, and basically everything you can do out of the house you can now do in. i guess that's okay for people who are allergic to the sun or air, but what about you...would you rather see everything through the internet or go and do it yourself?

Okay that has been bugging me forever...........had to get that outta the way. So if you happen to be reading this blog....let me know by responding to what I say below so I know I'm not crazy for talking to an empty wall.........okay well time to get to the mito portion of the blog. I have had a random need to go find out what ribbon color a disease corresponds to and low and behold I found a couple ribbons that correspond to me.....and here they are......

1. Red = DARE, Love
2. Yellow = Our Troops, Spina Bifida
3. Green = MITOCHONDRIAL DISORDER!!!!!!!, save the earth, go green, recycling
4. Blue = Dysautonomia, Chronic Fatigue Syndrome, Cyclic Vomitting Syndrome
5. Purple = 9/11 Victims, Cystic Fibrosis, Cancer Survivor
6. Gray = Diabetes, Asthma, Allergies
7. Lime Green = Muscular Dystrophy
8. Burgundy (Maroon) = Headaches and Migraines, Children Undiagnosed or Misdiagnosed with Rare Disorders or Diseases
9. Pink = Breast Cancer
10. Pale Yellow = Spina Bifida
11. Fushia (magenta) = Pro-Life
12. Baby Pink and Baby Blue = SIDS
13. Purple Ribbon w/ Red Rose = Cystic Fibrosis
14. Purple Ribbon w/ Red Stripe = Chronic Migraine Awareness

Find out which ribbons apply to you and post below or on my face book like page! here is the website: http://www.craftsnscraps.com/jewelry/ribbons.html
I hope to hear from you!!!!

Inaugural Rock and Roll Pasadena Half Marathon Weekend

Omg i am so tired.......probalbly not a good idea to post tired but oh well....im completly ignoring spelling and gramtical errors this post because of it.......get over it.............
it is now 10:28pm and last night i got to bed at 11:30pm just to wake up again at 5am
it has been a tiring and eventful day.
for the people who live near the rose bowl you might know what happened today....how did you guys like the traffic? Today was the Inaugural Rock and Roll Pasadena Marathon, Half Marathon benifitng CureMito......YAY!!!!!!!!!for a inaugural run it was incredible impressive......it drove me to tears while i was in the traffic for parking spots....i was told that there were over 7000 runners, a speculated amount of double the spectators, and over $100,000 dollars raised by the runners to go to CureMito to fund research.
it was amazing.....but i think you have to see the pictures to understand.............thats right people this is a mass picture blog post.
Lets start at the expo which went on friday and saturday

 

This one is of the CureMito merchindise

 

This is of Dr. Richard Boles and his three kids Phillp (oldest), Henry (middle) and Caroline (youngest) and if i remember correctly Henry and Caroline both have mild forms of Mitochondrial Disorders......but then again it is 10:38pm

 

And this is the banner that was in front of the booth

Now lets go to the pasta dinner saturday night before the race

 

This was one of the three shown in front of the stage

 

Thats me and my friend (who also has mito) Carrie

 

Thats me and Chandra Wilson of Grey's Anatomy....her daughter has a mitochondrial disease and she has become the spokes person for CureMito

 

This is me with my daddy......i believe it was his first time going to something like this and seeing me have to answer questions.....he would have seen my do a speech but they cut that from the evenings festivities.......

 

and this is a second one of the ones that were in front of the stage

You still with me???? Good now its on to race day!!!!

 

Here is a close up on the CureMito Reusable Bag

  

Here is the CureMito Beach Ball (signed by Sugar Ray for my friend Carrie and her Brother Connor)

  

This was actually taken at the expo but it was put in my race day collection before i found that out.....It is now 11:00pm.....i offically don't care

 

This is my friend Carrie with Sugar Ray

 

This is Me and my Mom with Sugar Ray

 

Sugar Ray is holding up a T-shirt and 2 balls all with the Cure Mito logo on them!!!

 

Me and my Mom Backstage before Sugar Ray goes on to play for the runners who've already gotten back

 

This is Carrie's Mom and she is telling Mark about Mito while he signs the Beach Ball

 

Mark with the Wheelchair Winners (these people all need wheelchairs and the lady [her name is sandi] has one over 50 races with her special racing chair)

 

The Winners

Mark raising his glass to those who ran

 

I really wanted a pic with him in the background and it turned out epic

 

At the end of the day they got most of the CureMito people together for a group photo.....can you find waldo???(aka me)

Soon days with this much excitment it makes it hard for me to sleep.....i just hope its soon because otherwise i will pass out......im running on 5 hours sleep and 18 hours of being awake.....6 more hours and will have gone 24 with 5 hours sleep............not good for mito kids..........you other mito kids know exactly what i mean....................okay it is officially 11:08....................lets see if i can sleep now.............other wise im gonna have a midnight blog blast............(i dont even know what that means) computer off....lights off............sleep mask on..............night!!!!!!!!!

My First Blog!

Omg this is my first blog...well i guess i should start with a little something about me...

I am a average American teenage girl. I want things that American girls want, but i also want things that most wouldn't need to want...I want a cure. I have a Mitochondrial disorder hence the name of the blog. My name is Leighanne and all I really want is to raise awareness for mitochondrial disorders and for a great foundation just starting to dig its heels into the ground, CureMito, it is run by mito families and by my fabulous doctor Richard Boles, A pioneer in his field. Not many things are known about this disease but here are a couple facts about it;

1. Its a common cause of strokes and seizures in children.
2. A Mitochondrial component in Autism is becoming increasingly apparent.
3. The vast majority of people with Mitochondrial Disorders have yet to be diagnosed.
4. Mitochondrial Disease is more common than Muscular Dystrophy, Cystic Fibrosis, and Sickle Cell.
5. Mitochondrial Disorders are more prevalent than all childhood cancers combined.

It can be hard sometimes. I can't go to school like other kids. I take a couple classes on campus and then I do the rest through Medical Home Schooling where a teacher comes to the house. I get tired really easy, I get migraines that hurt so much they blind me for anywhere between a couple seconds to a couple minutes. I could start throwing up and I won't stop, (I could throw up everything but I'd still be heaving like I was throwing up), until I'm in the hospital getting a thing called D10.....that is stuff I can handle though.

What's really hard is no one can ever really know what you are going through. My mom who has been with me through every hospital admission says she understands because she goes through it to. but she doesn't go through it like I do, she is in the "protective mother worrying about her kid" side of it, whereas I'm actually going through it all. My friends try but they never fully get what I'm saying.

So that is why I created this blog so I can vent about my disorder, shed some light on it, and I hope to find others with this disorder or help others who haven't been diagnosed but have many symptoms of this disorder. I hope to make a difference.

Well I guess that concludes this post. Keep it Real, Keep it Fun, and Spread the Word!