Stories of warriors touched by Wilson’s Disease and how they fought back by rallying people they know to walk with them and raise money for the patient registry.
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- Category: Wilson's Warriors
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.
- Details
- Category: Wilson's Warriors
Before his unexpected diagnosis, Mike Barnett (38) was your typical middle-aged man who supported his wife Sara, and their two children, Connor (10) and Carly (6). He owned his own business, played softball, and helped coach his children's baseball and softball teams. He was a terrific guy that would pitch in and help a friend move, or help an elderly neighbour.
Unfortunately, this young family was hit hard when Mike was diagnosed with Wilson’s Disease on March 16, 2018. While Mike had unknowingly had this disease his entire life, the diagnosis did not come until he had memory loss, seizures, and cirrhosis of the liver. He has been hospitalized and bound to a nursing home since diagnosis and is currently being assessed for a liver transplant. Mike has been undergoing treatment and therapy, but continues to struggle with the effects of this disease.
The family was hard hit by this disease as Mike had always been the financial head of household. Currently awaiting disability, the family has struggled to navigate the healthcare system with expensive medications and long-term 24-hour care requirements. We are walking for Mike for the Big Wow to help raise awareness of Wilson's Disease and to help build a support network for our area for those battling this life-long disease.
#BattleWithMike ️ #WinningWilsonsTogether
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