Ben Sullivan's Medical Fund

I was born with a rare liver disease that occurs in infants called Biliary Atresia. It is a life-threatening disease that damages the liver and in 1987 at twenty five months old I had a liver transplant at the University of Nebraska Medical Center. For 21 years I was very healthy! However, in 2008 while attending college in Orlando, FL, my liver started failing. I noticed when a classmate told me that my eyes were looking jaundice. I had a year left of college but I was faced with 8 months of monitoring and medical treatment. During my liver failure and treatment I developed medication induced type 2 diabetes. I had gone from living a normal life with plans to work in film production to a host of anti-rejection medications, blood sugar management and an absolutely staggering amount of medical debt and student loans. I was the very definition of life happening while we're busy making plans. I had realized that all of my twenty three years before liver failure had been taken for granted and developed major depression in the face of a pages long list of side effects all of which are going to be with me the rest of my life. Luckily I was able to continue my college's degree program and graduated a little over a year after my original graduation date. It was crushing to find that all of the college friends I made had moved on with their lives. Many of them had gone back to where they came from, some of them are even working in Hollywood today. I used to be angry and jealous at all the people who didn't have to deal with what happened to me or even something similar. Growing up made me realize, that kind of thinking won't get me anywhere, and as I took a step back, I realized how lucky I am to have the things that I do. I have a family who cares a great deal about me, amazing friends, a fiance that I love to the ends of the earth and my cat Bernadette. I realized that approximately 15,780 people between the ages of birth and 19 years old are diagnosed with cancer every year just in the U.S. and while I can say I never asked to be born with biliary atresia, neither did anyone with any disease or serious illness. My doctors have always told me they believe a huge contributing factor to my liver staying healthy for as long as it did before any problems, was my enthusiasm for life. I have an obsession with video games, movies and stand-up comedy and there's usually enough going on in that world and my friends and family to keep me pretty happy.

I still think about death every single day of my life. That there will be a time where I've taken my liver as far as it can go and there just simply won't be another liver waiting for me. If my life turns out that way, though, I can still count myself as more fortunate than some. So I live my life now with nothing taken for granted. If my health has taught me anything at all, it is to be humble. There are many people who know me and did not know about my health before reading this, and among those people are some that have there own health issues that I might never know about.

The reason I am creating this GoFundMe is so that I can prepare. There is a lot of damage in my liver at the moment, and it is not the type of damage that is usually repaired. My body continues to slowly attack my liver and scar tissue is slowly but surely taking over the organ. The only thing I can do right now is to stay on top of my diabetes (my current A1C is 7), diet and exercise, and consistent check-ups. I've been told by several doctors that it isn't a matter of if I will need another liver, it's when, and my current lab readings indicate that it might be sooner rather than later. The money earned here will go towards past hospital treatment bills from my initial liver failure and my inevitable liver transplant expenses in the future. Thank you very much.


Donations ()

  • Jared Fischer 
    • $50 
    • 23 mos
  • Anonymous 
    • $50 
    • 24 mos
  • Louise Avery 
    • $25 
    • 26 mos
  • Daniel Cuellar 
    • $50 
    • 26 mos
  • Anonymous 
    • $200 
    • 27 mos
See all

Organizer

Ben Sullivan 
Organizer
Overland Park, KS
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