What started as a cystinosis awareness effort turns into a life-changing encounter.
It all started with Jana (my twin sister) and I telling our story to the local paper the Duluth News Tribune. We were spreading awareness about cystinosis and how rare it is and our story of living with it. I also mentioned in the article that I have been on the transplant list for two years and I was having trouble finding a donor. I wanted to reach out and see if anybody would be able to help or know someone who could. The article came out on March 28, 2017. Soon after, the Bismarck Tribune, the Williston Herald and Grand Forks Herald papers picked up the story. All three papers originate in North Dakota, my home state.
Soon fate would step in. My donor happened upon my story in the Williston Herald. She read about our struggles with our rare disease and how Jana got her new kidney from our sister Jennifer a few years ago. She read how I was desperate to find a donor. She couldn’t get the article out of her head. She just kept reading it over and over again. She said it was in her heart to help me. She said she knew she would be a match for me. She called the University of Minnesota to be a potential donor. She was a match! Soon after she introduced herself to my family and me. Her name is Amanda and she is from my hometown. She knows our family and even had our dad has a teacher. She has since become a part of the family. She is the guardian angel who gave me a second chance at life. I will always be eternally grateful to her.
In preparation for Giving Tuesday, we are honoring Amanda and the “Great Givers” who’ve had an impact on our cystinosis community. If you’d like to learn more about Giving Tuesday, visit our event page.