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FARAFARA Cure FA

Casey Kasselder

My name is Casey Kasselder; I am 22 years old and from Tri Cities, WA. I am a student in college pursuing a degree in non-profit work. I have organized numerous fundraisers including a hockey tournament in Canada. I love organizing fundraisers and the smiles and happiness created as a result. I have this dream to organize a fundraiser in each state of the U.S., and every Providence of Canada before I am taken home. I know it sounds silly, but I want to leave a huge impact on this world and I am sure we can all agree when I say “this world could use MORE love and happiness.” I have a huge passion for inspirational speaking in hopes of inspiring people to follow their dreams, live life to the fullest, and see that the negative obstacle of yesterday, is an awesome gift for the future. I also LOVE sports like hockey, football (GO SEAHAWKS!!!), and baseball! I may not understand every rule, but I definitely enjoy games when on! 
 
I’ve always been a dreamer. From the time I was a child I’ve imagined the kind of work I would do. Work that made a difference in the lives of people. Work that required physical strength, stamina and courage. I fantasized about joining the military, becoming a police officer, a social worker, anything that would impact the lives of people in a positive way. I dreamed of being a hero. 
 
Growing up life was hard. My mother had been injured in an accident and become dependent on drugs to survive. Eventually her dependency turned to addiction and the mother I knew and loved became a stranger, more interested in her next fix than in mothering her children. The police were constantly called to our home until one day my father forced her to make a choice. The drugs, or her family. She chose the drugs and disappeared from our lives. I guess one could use that as an excuse, sink into depression, but I chose to continue to dream of making a difference. Then one day, eleven years ago, I was forced to face an ugly, painful reality. I was sick. I had started falling, a lot. My gait was unstable, my hands were uncontrollable, until one miserable day when I fell on my face, breaking my nose and causing considerable facial breaking. 
 
The good thing was, there was finally and explanation for my physical problems. The bad thing was that explanation was a diagnosis of Friedreich’s Ataxia (FA).  Incurable, life altering, likely terminal. I was in the seventh grade, all life was ahead of me, dreams to fulfill, and now it was supposed to stop, to take a backseat to managing my illness. I was expected to stop dreaming. To sit at home and wait for the inevitable loss of movement, and independence. I was angry, in denial about what this diagnosis would mean to my future. My Dad wanted me to quit school. He couldn’t see any reason for me to “waste” any of my time on an education I would never be able to use. I fought back. School was my salvation. A place where I could prove that there was more to me than this illness. A place where I could be known for something, something that mattered. 
 
Before FA, I had this perfect image of what my life was supposed to be, and after FA finding the pieces of that image torn and scattered throughout the rubble of a destructive tornado. As much as I have hated this diagnosis and what it did to my fantasy of a healthy, productive life, I have come to find value and purpose through the experiences that have come my way as a byproduct of my illness. I always wanted my life to be one of purpose, wanting to make a difference for others. That goal wasn’t going to be reached in the way I had dreamed, but I determined that it was going to happen. 
 
My disease has opened so many doors and given me numerous opportunities to influence others that might not have happened in my fairy tale life. I have learned that I have a purpose for living and that purpose wouldn’t come if I just threw in the towel and give up. I have a voice that can stand up for others facing trying circumstances and point them to a better outcome. I am not going to lie or sugarcoat my life with FA. It’s hard. On some days the pain and uncertainty are overwhelming. It has robbed me of so many precious things, and precious time I will never get back. I can live in regret, and anger about my circumstances, or I can take life by the horns and fight back. I can shut myself in my room and wait for the outcome, or I can step up to the plate and hit the ball. Maybe I can hit a home run. Maybe I can see another person struggling with a devastating diagnosis look at my life, and say “if she can do it, so can I.”  Maybe I can be the voice of those who society chooses not to see and value. Maybe I can prove our value and worth, through dignity, determination and hard work. I can fight back and fight through whatever comes my way. Because the alternative is to waste this most precious gift of life. FA is my biggest challenge in life, but it’s also the biggest blessing in my life!
  
"Creating smiles for people, even through their storms, trials, and tribulations, is the best thing in the world."

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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