Austins Story

Our son, Austin, was diagnosed in December 2016 after inform us of blood in his urine. We were immediately rushed to ER and tested his urine, which was black. It was revealed that his urine contained a large amount of RBC's and his hemoglobin was 93(9.3) We were kept overnight in a room at 30 degrees C. In the am his Hemoglobin had risen to 99 and we were sent home. The follow day we took him outside (being told it wasnt Vold induced). Within 30 minutes he fell ill and his urine returned to a black color. We took him for blood work and his HgB had fallen to 73. We were readmitted and started on prednisone. We remained in the hospital for 6 more days with his hemoglobin falling to 60. The follow day is had risen to 68 and we werent send home. We kept him inside and in bed for another 3 days. We exposed him to cold again and within minutes he had another episode with black urine, blue lips and exhaustion. His hemoglobin was at 81 and we were sent home.

His levels are back to normal at 126 but he has not been exposed to cold weather from Jan 3rd - March 15th.