The White Crayon

November 3, 2016

Today, we heard from a remarkable young man, Matt Pearl.  In his short life, Matt has endured more than most of us will in our lifetime.  Matt's story is one of perseverance and resilience.  

 

Matt's life was saved by a bone marrow transplant. In the spring of 2017, Matt will be hosting a bone marrow registration drive at Westminster College. By increasing awareness and adding names to the registry, more lives can be saved.  We will share more information the event gets closer.

 

Below is Matt's story, in his own words, shared with us today.

 

"You are probably wondering why I’m standing here with a giant white crayon. 
 

Think about it…It is the crayon that never gets used. The sharpest one in the box. The one that never gets picked.  Never touched. But one day, the white crayon will stand out because you will learn that all you ever needed was black paper.


I believe there are just two kinds of people…The ones who say they’re just not able and the white crayons who change the world. 


I am now 19, but there was a time in my life when I did not think I would make it to 4th grade, let alone be standing here today. 


I have learned life can be unexpected and unexplainable, with extraordinary actions coming from ordinary people… just like all of you.


In 2001, my parents received devastating news that my sister and I were diagnosed with a rare, life-threatening blood disorder called Fanconi Anemia otherwise known as FA.


FA can cause abnormalities of the hands and forearms, along with hearing impairment, having only one kidney and of course, being shorter than most. 

 

My sister, Alexandra and I have all of these issues…plus many more. 
 

Would I do-over having FA?  No, it has made me who I am. In 2001, my sister went into heart failure and required a bone marrow transplant immediately to save her life. The survival rates were only 17%, but she was dying. 

 
Then… in 2006, I went into bone marrow failure and also needed a transplant to save my life. My chances for survival were better, but still only 50%. I was very sick, on lots of strong drugs (don’t do drugs, they are awful) and I did not eat or leave my hospital bed for many months. 


A lot of kids around me passed away. ….. It was hard.
 

We lived in a Ronald McDonald House, dad lost his job and insurance, so we had many hardships to deal with.  


In addition, the average age for FA is only 33 years old due to chemo and radiation, next we may face Cancer. Nevertheless, 14 years later for my sister and 9 years for me, here we are! 


We are both in college…thanks to God and the ADA!!


At age 3, I received my first hearing aids (they are pretty cool because they are bluetooth and I can listen to Christian rock in one ear and my professor in the other.) 
 

At age 9, I was giving myself shots every day to stay alive and constantly in the hospital. Life turned for the worse and my bone marrow transplant took place in Minneapolis, Minnesota. It was even more difficult than my sisters. The doctors lost me 3 times; and I told mom and dad I had enough. I was done. 
 

Everyone thought it was possibly the end of my life and the doctors had no more answers. Obviously, “I never gave up...I am not a quitter.” Many teachers and specialists used the ADA to give me every advantage in my education and in my life to push me harder. I had quite the extensive IEP! The leadership and selfless examples I have witnessed are priceless and have made me who I am.I learned not to be afraid to ask for help…to be a leader, take charge and surround myself with positive people.


College was something I never thought would happen, so this is my chance to say thank you to the ADA and all of those special people, especially my parents, who taught me how to turn a disability into an ability. In fact, I received enough in scholarships to pay for my first year tuition to Westminster College. 
 

However, I am unsure about the next three years…. 
 

But luckily my giant white crayon is also a bank?? I try hard to make the most of what I have. I know success is no secret, just good choices. I surround myself with family, professors, friends and mentors that give me the tools, hope and encouragement to do better than my best. I actually graduated high school early to intern at Harvard working in the research lab at The Dana Farber Cancer Institute in Boston. 
 

I learned I don’t want to be a researcher, but major in public speaking and Not for profit to tell everyone about it.  My goal is to speak on every continent. I am determined to do whatever it takes to save lives and improve treatments for people with disease and disabilities. I challenge our government to do the same. 
 

Courage and perseverance is what you need to change the world. I am confident I will be part of the change. 
Change is choice. You choose to smile or to frown. You choose to hold the door open for someone or let it slam in their face. 

 

If there is one thing to remember from my speech today it is this: 

 

Different is ok. Don’t ever be afraid to be different. I will leave you with my favorite quote:
 

'Blessed are the weird people. The poets, and misfits, the artists, the writers, and music makers…the dreamers and the outsiders, even the politicians…for they force us to see the world differently.'

 

So don’t be afraid to be the White Crayon. All you need is black paper…"

 

-Matthew Pearl

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