'I'm the girl in the photo, and I'm not ready to die young'

In 2008, the then 21-year-old discovered she was carrying an ultra-rare genetic disease after she was diagnosed with the life threatening condition Atypical hemolytic-uremic syndrome (aHUS). The disease acutely damages major organs like the kidneys, liver, heart and brain due to blood clots in small blood vessels, and can cause death through strokes, kidney failure, heart attacks - or drowning.