Our family was touched unexpectedly by Wilson’s Disease on Christmas Day 2015 when my oldest daughter suddenly began showing signs of liver failure. She was admitted to the hospital and experienced numerous complications before passing away on January 19, 2016. Due to the complications and the advanced liver and kidney failure, we did not receive a diagnosis of Wilson’s Disease until after she died. Elise was 12 years old.
After her death and diagnosis, Elise’s three younger siblings were all tested and two of them were also diagnosed with Wilson’s Disease. My 11-year-old daughter Karina and 10-year-old son Jonah are both currently undergoing chelation therapy and are doing well.
We are sponsoring this walk to raise awareness of Wilson’s Disease and to build a support network for those battling this life-long disease.