Marion's Story
Marion Williamson was born in Reno, Nevada on January 27, 1985. In April of 1992, when she was only seven years old, she was diagnosed with a rare disease called Cystinosis. Cystinosis is a genetic disease that causes crystals to form in the cells and organs of the body. By age seven, the disease had already destroyed her kidneys and in July of 1992 it was determined that Marion would need a kidney transplant. Fortunately, Marion’s father, Mike, was able to donate one of his kidneys to her. The transplant was a complete success. In addition to the crystals causing her kidneys to fail, crystals building-up in her eyes were affecting Marion’s vision. Marion and her parents must travel to the National Institute of Health (NIH) in Baltimore, Maryland every year to get the prescription eye drops that dissolve the crystals in her eyes and relieve the pain the crystals cause. The NIH is the only source in the country for the eye drops, and Cystinosis patients can only obtain the eye drops if they participate in a research group and travel to the NIH each year.
Marion has always been a fighter, despite her health challenges, and she has always been determined to lead a normal life. She played softball and pool, loved to bowl, went camping, fishing and swimming and enjoyed a full and active life with her friends and family. She is very bright and did well in school, however she had bouts of severe headaches and nausea from the medications taken for the Cystinosis. In high school, Marion missed many days of school and although she was excused by her sickness, the number of absentees did not go unnoticed. It was recommended that Marion be placed in special education classes; however, Marion refused to go into the special education program. She stopped going to high school and instead went on to get her GED. (She passed the GED test without taking classes or studying). She had plans to attend community college. Marion also decided to train for and became a volunteer at the Crisis Center Suicide Hot Line.
In March of 2006 Marion’s body rejected the transplanted kidney and she had to begin hemodialysis treatments. She was still determined to lead a normal life even though she had to receive dialysis multiple times per week and still had the underlying disease of Cystinosis. She bought her own camping gear and went camping often, and she was also in a bowling league. She had a very active life with her family and friends. Marion was on a kidney transplant list to receive a new kidney, however because of her brain injury in January of 2007, she was not well enough to stay on the transplant list.