Troy Rupar's Journey

Troy-Jared Rupar was born on September 2, 1989. When he was about 1 year old he developed swelling and scabbing, doctors researched and tested him for numerous things. It was finally decided that he had Erythropoietic Protoporphyria, EPP for short. EPP is characterized by abnormally elevated levels of protoporphyrin IX in erythrocytes (red blood cells) and plasma (the fluid portion of circulating blood), and by sensitivity to visible light.(this is taken from www.porphyriafoundation.com) Basically Troy was allergic to the sun. He would swell, scab, and itch where the sunlight might have got him. There are only roughly 2,000 people in the US that have this disease.
Troy couldn’t be out in the sun not even in the shade without being completely covered up. As a teenager he would often be found on 90 degree days with a hooded sweatshirt, gloves, and a hat, just so he could possibly go out of the house. He never had any problems with this disease besides the obvious of not being able to do normal activities in the sun. Troy went on to college and graduated from Alfred State with an associate’s degree in Auto Body. He then got a job working night shifts for the gas and oil field.
Troy began to get sick in January of 2014, at the age of 24. He became jaundice and underwent many tests to see what was causing the problems. He was diagnosed with Epstein-Barr Virus. By May he still wasn’t feeling any better and began to retain fluid. On May 5, 2014 he went in to have a liver biopsy done since EPP can affect the liver in some cases(only 5%). The biopsy showed that his liver was hardening and he was going into liver failure.
He has been hospitalized numerous times since May as his liver is not functioning like it should. Troy was referred to specialists in Philadelphia. He is now on the waiting list as of August 5, 2014 for liver transplant. The doctors are also starting the evaluations for a possible bone marrow transplant as they think it could possibly eliminate his disease, he begins that journey on September 2014.
The liver transplant surgery will last several hours and because of the lights used in the operating room a special film will be needed to protect him from the lights. Philadelphia hospital does over 100 liver transplants a year and hasn’t done one with someone that has EPP in over 20 years. Also most liver transplants only last for roughly 7 years so he could be looking at more transplants in the future due to his young age. He is still in and out of the hospital while waiting for a match.
Troy has good insurance however the co-pays are adding up and the trips to Philadelphia will become more frequent. He has been unable to work for several months and it could be several more months before he is able to go back. All the money raised will be used to help pay for the medical expenses and trips to the hospitals.

  • Judy Smith 
    • $25 
    • 82 mos
  • Gry-Bente Johansen 
    • $100 
    • 83 mos
  • Alyse Mitchell 
    • $30 
    • 83 mos
  • Troy Westlake 
    • $20 
    • 83 mos
  • Daisy Jelliff-Bennett 
    • $100 
    • 83 mos
See all

Organizer

Shenelle Brockway 
Organizer
Lawrenceville, PA
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