Hi, I’m Lindsay Hruby, Beau is my cousin. Many of you know that Beau was born with a condition called Erythropoietic Protoporphyria (EPP). EPP is a rare inherited metabolic disorder which means he has a deficiency of the enzyme ferrochelatase. Due to EPP Beau has experienced hypersensitivity of the skin to sunlight and sometimes artificial light. There are many more complications that come from having this disease, you can read more about it at www.porphyriafoundation.org.
Beau’s parents and brother are Craig, Kaila (Kopp), and Levi Dessing. His grandparents are John and Lori Kopp (Anaconda, MT) and Rick and Lisa Dessing (Clarkston, WA)
Beau was a part of EPP studies conducted at the Hunstman Cancer Institute and Children’s Primary in Salt Lake City, UT at age 8. Following those studies he was instructed to avoid sunlight and did so throughout his childhood into adulthood. There is much more to do now though.
Beau graduated from Butte High School this year and showed really no significant symptoms until June 2023. Beau spent the following 3 months hospitalized on and off at St. James in Butte, MT and then the University of Utah Hospital where he currently resides.
Once under the care of specialists in Utah, it was determined that he was in liver failure among other internal organ complications early on. He has been treated with daily blood transfusions and is currently in the ICU at the University of Utah hospital awaiting a liver and bone marrow transplant.
One of the requirements to be eligible for transplant is to have the ability to secure housing for six months and 24 hour a day care post transplant in Salt Lake. Beau’s ability to work will be severely limited going forward.
He is currently fighting to return to normal life but has a very long road ahead. While he and his family apply for assistance he is eligible for, we are asking anyone who would like to donate to help Beau pay for housing, daily living expenses, travel costs, among other things he may experience along this long road. He also needs our prayers, thoughts, kind words and messages.
Thank you all for taking the time to read this and we will continue to post updates as we go.