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. Thanks to their early diagnosis and proper treatment, they are both healthy and blessed to be living a full life.
Today, Karina is 13 years old and taking Galzin twice daily. She plays the bassoon in the school band and is active in Scouts where she enjoys camping and doing volunteer work.
Jonah is now 12 years old and takes Syprine twice daily. He plays the French Horn and enjoys playing soccer and video games with his friends & cousins.
Their 16-year-old sister Annika is their biggest supporter in sticking to their low-copper diet, which is not always fun. (We all miss chocolate!!)
We are sponsoring this fundraising for the Wilsons Disease Patient Registry in honor of Elise and in thanksgiving for Karina and Jonah's health, with the hope that others affected by this life-threatening illness may benefit from early diagnosis and proper treatment.