I am...

I am strong and unique.

I wonder about new adventures.

I can be an advocate for those without a voice.

I hear words of wisdom.

I see a future so far yet so near.

I want to see a cure for mito in my lifetime.

I am strong and unique.

I pretend that I'm okay even when I'm not.

I feel the love from my family.

I touch the soft comfort of my blanket.

I worry that I won't ever get better.

I cry about the past and future.

I am strong and unique.

I understand more than anyone my age ever should.

I say you wouldn't last a day in my shoes.

I dream of a world without disease.

I try to work hard in school.

I hope to one day become a famous writer.

Why You Should Choose To Say "Yes" To Organ Donation

Getting your driver’s license is something every teenager dreams of. Getting behind the wheel for the first time, being in control, and finally having more independence is one of the best feelings in the world. However, there’s one part most people forget when they go to the DMV to get their license. That one thing is to check the little box that asks if you want to be an organ and tissue donor. Saying yes to organ donation is one of the most selfless things people can do in their lifetime. After your death a trashcan will either get your organs, or maybe a child, a mother, a grandfather, a sister will have the opportunity to continue to live with your organs.

One person can save up to eight lives with an organ transplant and enhance 50 others with eye and tissue donation. That means eight people get to live on with their lives and continue to do all the things they love and have extra time with their loved ones all because you checked “yes.”  The transplant recipient will get to do all the things we take for granted everyday: find the love of their life, get married, graduate high school, have their first kiss, and even continue to play their favorite sport.

Currently more than 123,000 people are on the waiting list for an organ transplant but sadly there are not enough people who are willing to donate their organs. Therefore twenty-one patients die waiting for their call for that new organ. Approximately 150 people are added to the list daily. The good thing is there are no costs to the donor or the donor’s family for the donation of their organs.

When I was fifteen, I chose to become a donor when I got my permit at the DMV because I want something positive to come out of my death (whenever that maybe). Life will blossom because I chose to let another person live. To me organ donation feels like I am paying it forward. I can "outlive myself" with that special gift. I want to feel like my life has a purpose and that purpose would be fulfilled if someone would get to continue to live and breathe because of the choices I made in my life.

I have also seen first hand what it is like for someone to have so much joy and gratitude towards life because someone checked ‘yes” so that they could live. A friend of mine named Alex became a heart-lung transplant recipient in May of 2013. Alex made it his mission to educate everyone he came in contact with about organ donation. His father says he urged all his friends to become donors when they got their license. The year and a half following his transplant Alex battled several different complications post transplant. He took each day in strides and lived every day to its fullest pursing his love for music. Come the end of January 2015 Alex became very sick with a severe infection and was admitted to the Children’s Hospital. Sadly Alex left the earth on February 12^th, 2015.

Alex brought great joy to everyone he met and inspired hundreds through his Instagram account where he advocated for organ donation. Recently, someone had commented on his last picture he posted before he passed away and said “I got my drivers permit today and chose to be a organ donor, because of your account. I realized how much it can truly save someone’s life! RIP! <3” He truly made a difference in the lives of others because he choose to educate the world about organ donation.

Alex got to spend an extra year and a half with his family because of an organ donor. I got to meet Alex because of an organ donor. I would’ve never meet Alex if it wasn’t for that donor and I will be forever grateful for that opportunity. A total stranger made one decision that forever changed not only Alex’s life but also the life of everyone who knew him. With organ donation you don't just change the lives of the recipient but all those around them as well.

I want to live to a day where no one has to die because the call for a new organ didn’t come in time. A transplant can extend a patients life for several months but also possibly several years. That’s another birthday, another Christmas, and another moment spent with those they love. There is so much meaning and value in life that we don’t realize until it’s almost taken from us. Anyone who has had a transplant or watched a loved one go through a transplant will tell you it’s the most beautiful and bittersweet thing. While one family is mourning many others are given a second hope. Life comes out of death and while there is great sorrow there can also be much joy.

Please remember that the DMV is no longer the only place you are able to register to become an organ donor. In life we are told to always give back and what better way is there to live than being a donor?

If you would like to learn more about organ donation please visit: http://donatelife.net/

To register to become an organ donor: http://donatelife.net/register-now/

To read Alex's story click here.

*All photos taken from Alex's Instagram page with permission.*

CCK 2015

I just spent the past week at what I call one of the best places on earth! There is not much that I can say that explains how I feel about The Center for Courageous Kids! This place has been my home for the last three years. I've attended camp here since 2012 for some of the family weekends but then in 2013 I spent my first week as a camper during the summer. The best memories have been made here from my first year at camp.

It will always be my favorite year because it was the year I fell in love with this place. There was so much to do and everyone knows what it is like to be me. To have to struggle with some sort of chronic illness.

Last year in 2014 I met a girl named Elisabeth. She has Cystic Fibrosis. Elisabeth is quite a few years younger than me but she is the only one who understands what it is like to be seriously sick but, not only seriously sick her brother also had Cystic Fibrosis and he passed away a little less than two years ago. Elisabeth knows what it is like to be following close behind that same path that your sibling has already gone down. She knows how scary it can be. We talked forever at the dance last year about our story and our experiences. Both stories seemed very similar. I didn't have to explain what it's like to have a feeding tube, a port-a-cath, take countless medication and being able to swallow about 10 pills all in one time.

This camp has shown me I am not alone and it has given me a week to just be like all my other friends even if I can't attend a "real" camp. The only downfall is that Elisabeth and I live roughly 9 hours away. It will be extremely challenging to see each other but I know we will be able to make things work.

We cried so hard Friday night at the end of the final campfire. It was a very bittersweet moment. I am so lucky to have met Elisabeth but I hate that this was my very last year as a camper. I can't put into words about how much this place has meant to me in these last few years. It's always a great way to start off the summer and I will be forever thankful for this place! Home is where the heart is and my heart is at CCK.

To read Elisabeth's blog click here.

A Bittersweet Friendship

Almost a year to the date on a beach getaway my family sat in a nice restaurant eating a delicious dinner. Well almost all of us...You see my brother and I have a disease that makes our digestive tract unable to move and digest food properly in your gastrointestinal tract. Due to the severity of the disease we are both fed through a central line in our chest to get the nutrients straight into the blood to bypass the digestive tract. Everything the average person eats on a daily basis we can't have.

Sitting at that dinner table that night was particularly difficult on Tyler. He was only nine at the time and was starting to realize he is different than everyone else. Having to watch people do something we can't like eating feels like torture. Thankfully at home our parents don't request us to sit at the table with them while they eat. We have an "open door" policy. If you want to sit down with the family you can if you don't want to sit down with them for dinner you are able to do what you need.

However, a time like this there wasn't an option. There was no place to escape to that would allow us to get away from the aroma. As I saw Tyler struggling I offered to take him outside to the back patio because I knew it was hard for me to sit in there much less a little boy to sit and watch everyone eat. We found some nice rocking chairs to sit in and started making silly little jokes. Anything to get our mind off things. Soon we paused looking out into the ocean he began to speak and said "You know what?"

I replied "What?"

He proceeded to tell me that if I didn't need to have tubes and only he would be the one who was sick and with the tubes he would do it. I don't like my tubes at all but I would do it!

I broke down and that little boy didn't know one reason why I would be crying. He thought he had made me upset and I just took him into a big embrace and we stayed that way for what seemed like hours. My little man was so selfless and he always worried about me and how I was feeling when he should be worrying on himself. I am supposed to be the one who worries about him. Mentally the disease puts a big strain on his little mind which can't comprehend all of what has occurred. Yet, Tyler is the one telling everyone else to stay strong.

Tyler and I have always had the closest relationships that brought our bond even closer. I believe we became best friends for that reason. We were close before we were both critically ill but after we both became each other's biggest supporter. I can understand many of the emotions he has and help him through while there are some procedures he has to help me through. It's tough to see the fear and worry in his eyes because I know it all too well. If we lived a typical life I doubt never have this bond with my brother.

It's definitely bittersweet. While it sounds so amazing to have a partner to go through all this together so neither of us had to be alone I would never want the situation to be like it this. Never in my wildest dreams did I imagine we would both be stuck together in this awful situation! The two of us have had to be strong for each other and that's what has made me remain positive because I know I have to do it for him.

That moment on the beach that summer night I knew we would be okay. I knew we would make it through the worst and the much more to come. We would survive and live life to the fullest all because we had each other as our source of strength. It was definitely a shock to hear this from my youngest brother but it just further validated the reason why he is my best friend and my superhero.

Your Assumptions Can Hurt

People assume many things based on how we look on the outside. They assume we are healthy, happy, loved, and that life is going great. However, sometimes what they assume is wrong. People have all these little quirks inside of them that are invisible. We can't assume that a person a person is happy. We bury things deep inside to hide from people. We also can't assume that someone is healthy. You see 96%, of chronic illnesses are hidden or "invisible." This is where the term invisible illnesses come from. A person can look entirely normal on the outside meanwhile their body inside is attacking itself. The aches and pains all hidden behind a smile.

About a year and a half ago I was volunteering at an adult/elderly care facility. This was my first time ever coming out to help. A woman who was also helping out that day was probably in her 60s or so, had struck up a conversation with me as we were walking to down the empty hallway to get some supplies from the closet. She proceeded to tell me how good this experience will be for me. I had quietly agreed with her as I was too shy to strike up a real conversation. As she continued she told me this will show me how thankful we should be that we can eat, drink, walk, run, talk, and do most everything on our own. I replied "Yes, Ma'am," Yet I thought to myself how many of those things I couldn't truly do without help or even at all. She didn't know as, my picc line and feeding tube were hidden beneath my sweater I wore during the cold autumn evening.

Her inability to see my disease was the worst. I just wanted to scream and shout at her, but she didn't know. There was no way for her to possibly know. Yet, I stayed silent. I often wonder how I would respond today. I am definitely much more vocal about my disease now than I was. I would probably politely try to explain that. That many of those things are not so easy for me. I take too many pills to count everyday. I have a central line leading directly to my heart. A year and a half ago I had just been put on TPN about two months prior to  this conversation with her. This was a time where I had been NPO for everything. Today things have slightly changed. I am drinking some and able to eat a little more than before but that doesn't mean they still come easy. I still get sick and am in pain every time I eat or drink however much of the time it is now tolerable. Running and walking hurts my joints terribly and there are days I am too weak to get out of bed much less walk or run a mile.

Sometimes I wish I could just scream and shout at those people who don't think I am sick or am faking it. Apparently I do a great job on hiding the daily pain behind my eyes and that smile I proudly wear daily. It's practically impossible for them to look on the inside. Before anyone truly meets me they believe I am healthy but sadly that's just not the case. I receive these labels such as "normal," "healthy," and "typical teenager" all because I look just like your average. I'm supposed to be the teenager who wakes up every morning and heads to school, the teenager who stays awake till two in the morning doing absolutely nothing, the teenager who doesn't care about anyone but herself, and the teenager who thinks she can take on the world and is completely invincible but I'm not. I'm the teenager who wakes up in the morning and goes to the hospital, the teenager who has learned more than once that one stupid thing can kill you in seconds, the teenager who goes to bed at six in the evening because she's too exhausted from fighting her body all day to keep her eyes open, and the teenager who is trying to play her cards the best way she can with the stack she's been dealt.

It's not easy for anyone to be judged by all these social standards we have come to assume in our everyday life. I don't think we look deeper beyond the face or appearance. They always say to never judge a book by its cover but I find that to be impossible. We look at people for their stereotypes but when we sit down and try to understand their life that's when the table turns. I don't want to be known for my disease but I don't want people to diminish it and pretend it doesn't exist because it does. Mitochondrial Disease and all my other diagnoses are very hard to live with and I think people need to be aware that just because I don't look sick doesn't mean I'm not. We all hear people who tell us how great we are doing and that we are fine but we all have that one moment where we want to shout and break through our silence and tell them the truth. Today go out in to the world and try your hardest not to assume or judge based on stereotypes. It is hard not to pass judgement but just try and one day you might just realize the differences you never noticed in life.