18 AUGUST 2015 PROMOTING EVENTS THAT MAKE A DIFFERENCE INTHEVUE.COM INTHEVUE.COM PROMOTING EVENTS THAT MAKE A DIFFERENCE AUGUST 2015 19 W ith confdence and self-assurance, Kari Averill of Murray enters a room like a woman on a mission, assessing the room’s layout and mentally mapping her path. Kari is one of only 20,000 Americans living with hereditary spastc paraplegia (HSP), a rare and inherited neurological disease. Primary symptoms of HSP are progressive spastcity and weakness of the leg and hip muscles. The degeneraton of nerve fbers leading through the spinal cord make simple tasks, like walking across a room, difcult and cumbersome. HSP is so rare that Kari went undiagnosed for years untl a chance encounter in 2002 with her cousin, Donald Pruit of Clinton, in a doctor’s waitng room. “For two years, the doctors ran numerous tests that all came back negatve,” Kari said. “I was walking out of the ofce when I ran into Donald. A bell went of, and I immediately re- turned to tell the doctor I wanted to be tested for what my cousin has.” As a hereditary disorder, all members of Kari’s family carry the gene. There is a 50/50 chance of it developing into HSP, but re- searchers have not found what factors, if any, cause the development. Her cousin’s son, Greg, is also living with HSP. Coming to terms with the diagnosis has been difcult for Kari. For years, she tried to hide the symptoms and created excuses, as her body began to change and made walking difcult. “At the tme, covering up the symptoms- and ultmately, how they would progress over tme seemed like a major deal,” Kari said. “If I couldn’t explain the disorder to myself, how could I explain it to others?” In 2008, Kari began using a cane to help with her balance and prevent stumbling. She remembers going to church the frst Sunday afer receiving the cane and being unable to enter the building, She could not face the questons and concern. HSP has had an all-encompassing efect on Kari’s life. Unable to sit or stand for long pe- riods of tme, Kari was forced to quit her job By: Jessica Byassee Photos by: Maximillian Curry Sometmes God allows things to happen to change people, and this experience has made me stronger. Taking a Stand 20 AUGUST 2015 PROMOTING EVENTS THAT MAKE A DIFFERENCE INTHEVUE.COM in 2012. Fortunately, she recently found work that requires only minimal hours and allows her tme to partcipate in physical therapy three tmes a week in additon to daily ex- ercises at her home. Kari visits specialists at Vanderbilt Hospital in Nashville every three months but credits exercise as having had the most positve impact on her body, physically and emotonally. Kari has become very actve with Hardin Baptst Church’s Meal Ministry. When faced with an issue like HSP, she is a frm believer in fnding an actvity to give a sense of normalcy. The increased confdence gained from actv- ity helped Kari begin 2015 with a new deter- minaton to live her life and stop hiding. Kari contacted her cousin Greg, who is actve with the Spastc Paraplegia Foundaton. The tming was perfect as the Foundaton was looking for a new Kentucky State Ambassador, and Greg encouraged Kari to step into the role. “Sometmes God allows things to happen to change people, and this experience has made me stronger,” Kari said. “I am not proud to have the disorder, but I am proud to take a stand and raise awareness.” As the State Ambassador, Kari has been empowered to speak freely about her life with HSP and allow others to know her bet- ter. Together with Greg and his brother Chad Pruit, who does not have HSP, Kari is organiz- ing a golf scramble to raise awareness of HSP and other spastc paraplegia disorders. The scramble will be held at Drake Creek on September 19 with all proceeds beneftng the Spastc Paraplegia Foundaton. Sponsors, volunteers and players are all stll needed. To register or learn about sponsorship opportu- nites, email [email protected]. Where Are They Now? Kari’s first feature in the August 2015 issue of VUE Magazine INTHEVUE.COM | PROMOTING EVENTS THAT MAKE A DIFFERENCE | JANUARY 2023 67
