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Or Call Jeff 641-919-0299 or Ted 641-233-7420 (MCN) 1200 Gottsleben, a Vermillion native, publishes book in face of personal adversity By Katie Clausen For the Plain Talk Just like anyone who grew up in Vermillion, Kendra Gottsleben has fond recollections of time spent going to the movies, having sleepovers, and playing games with schoolmates on the St. Agnes playground. “I just have amazing memories of growing up in Vermillion,” Gottsleben said. “Being able to go downtown, driving my chair to the movie theatre, and going to high school games.” Unlike anyone growing up in Vermillion, she had a rare disorder. “I wasn’t always able to run and play with my friends,” Gottsleben said. “But my friends were able to come play with me.” Native to Vermillion, Gottsleben, 30, was diagnosed with an uncommon genetic condition at a young age. This condition affects her physically. “I have a genetic disorder, which is rare; it’s called MPS Type six,” Gottsleben said. “There are probably about 100 people in the US with MPS Type Six.” MPS, an abbreviation for Mucopolysaccharidoses is extremely rare. At the time of Gottsleben’s diagnosis, there weren’t many treatment options available for patients with MPS. The family spent time traveling to the University of Minnesota Medical Center, which specializes in MPS diagnosis and treatment, returning home to wait for new therapies and research to come to fruition. “I was diagnosed at age four and at that time there really wasn’t much to do,” Gottsleben said. “We were told about three options for treatment.” The first option was a bone marrow transplant, which sounded too risky for, at best, dubious reward. The other options were gene therapy and enzyme replacement therapies that were still in the experimental stage. So they waited. And then they volunteered to go first. “I was part of the clinical enzyme research trial,” Gottsleben said. “So sophomore year I was gone for a couple of months, where I was living in Oakland, California, doing that trial.” Gottsleben dove deep into the medical experiment, hoping the enzyme therapy would alleviate some of the symptoms associated with her disorder. “They were ‘Naglazyme’-regular infusions,” Gottsleben said. “So even though it wasn’t FDA approved, I was still receiving that therapy. It was finally approved in 2005” Gottsleben still regularly receives infusions because of the body’s ability to flush out enzymes frequently. She can tell now that there are physical T K YOU! THANK YOU! O To my To my family and friends fo for or helping me celebrate my helping celebrate my th 80th birthday... birthday... You it days You made it one of the best days o my life. of my life. e Jo Davis J Joyce D Crop Consultation “Reinforce the Business... in your Agribusiness” Mission Statement: differences if she misses or delays a therapy session. “I noticed immediate results when I was in California and now I’m pretty stabilized,” Gottsleben said. “Soon after going on the medicine my hair and skin became softer, my organs went back to normal sized, and I had more energy” Although MPS will be part of who she is forever, her quality of life was improved by having the therapy available. “It affects my connective tissue, heart and other vital organs,” Gottsleben said. “Because of that is why I’m shorter. Eyesight is kind of an issue, too” Although living in South Dakota meant having to travel for therapy early on in treatment, Gottsleben feels as though the Vermillion community was influential, if not critical, to her adult success. Currently residing in Sioux Falls, Gottsleben is proud to call Vermillion home and feels that the community was a key component to her development. “I feel that growing up in Vermillion was probably the best thing for me because it was a tight knit community, and that was something I enjoyed,” Gottsleben said. “It was a small town type of mentality, but at the same time, I believe with the college we had so much going on.” Gottsleben has a tight knit group of friends from childhood she still keeps in touch with. As she moved on from elementary school to the communal middle school and high school, where she had to get a special chair to help her get from class to class, she made friends with many classmates who never saw her as different. “I never felt like I was odd or that I was different,” Gottsleben said. “I felt like I was accepted which helped me develop my confidence today. I never felt like I didn’t belong.” Physical restrictions did not hinder Gottsleben PRECISION PAINTING *CASH TODAY* We'll Buy Any Car (Any Condition) + Free Same-Day Pick-up. Best Cash Offer Guaranteed! Call for FREE Quote: 888-654-4994 (MCN) *CASH TODAY* We'll Buy Any Car (Any Condition) + Free Same-Day Pick-up. Best Cash Offer Guaranteed! Call for FREE Quote: 877-629-9182 (MCN) CARS/TRUCKS WANTED! Top $$$$$ PAID! Running or Not, All Years, Makes, Models. Free Towing! We're Local! 7 Days/Week. Call Toll Free: 1-888-416-2330 nani CASH FOR CARS: Any Make, Model or Year. We Pay MORE! Running or Not Sell your Car or Truck TODAY Free Towing! Instant Offer: 1-888-420-3805 (MCN) Kendra Gottsleben, author and marketing specialist, uses a chair to help her navigate. COURTESY PHOTO while finishing up her education within the Vermillion Public School system, some of which can be attributed to her strong will, and some of which can be credited to the environment the school provided. “I really do believe I wouldn’t be where I am today without having been a VHS graduate,” Gottsleben said. “Or had the education we had, or being a part of that exposure to education because of the University.” Inspired by that distinctive education, MPS, and life experiences, Gottsleben found a way to meld her concern for the cause of disability awareness and teaching other’s about life experiences. Aside from volunteering for experimental therapies, giving talks across the country about MPS, serving on public interest committees, and working for the Sanford Center for Disabilities, Gottsleben has decided to write books. “The first book I wrote was self-published in 2012,” Gottsleben said. “That book is more of a culmination of an autobiography and things I’ve gone through.” While Gottsleben doesn’t claim to be a motivational expert, the autobiography titled “When Life Hands You Lemons” falls into that category. “The second half of my Quality Workmanship, Reasonable Rates Since 1983 book I talk about how to overcome things that you have to do to deal with life and have the outlook that I have,” Gottsleben said. “I write what I know.” First inspired to write by Mrs. Haggerty in fifth and sixth grades, Gottsleben’s writing has now spilled over into the children’s literature genre as well. “The book that I’m working on now is kind of like the same take on that but it’s a book for children who are school age,” Gottsleben said. “I am the character, I am talking about acceptance and how we’re all made different.” Gottsleben hopes the book will help children understand disabilities, from both an inside and outside perspective. “I feel like if we can help children learn right away that it’s okay to be different, the better off they will be in life,” Gottsleben said. “The world is full of hardships no matter who you are, no matter if you have a disability or not.” Author is only one title Gottsleben holds, however. In addition to her writing endeavors, Gottsleben is the Marketing Communications Specialist for the Center for Disabilities within the Sanford School of Medicine. Gottsleben was drawn to this position and The Center because of her unique experience growing up. “For me, there are a couple favorite things. I’ve always grown up in the world of education and then I’ve also grown up in the medical world. I feel n OIAV, Page 05 ATTENT DRIVERS ATTENTION DRIVERS TTENTION T JOEY HANSON Crop Consultant/CCA 605.659.4783 DONATE YOUR CAR, TRUCK OR BOAT TO HERITAGE FOR THE BLIND. Free 3 Day Vacation, Tax Deductible, Free Towing, All Paperwork Taken Care Of. 1-800-283-0205 (MCN) GET CASH TODAY for any car/truck. I will buy your car today. Any Condition. Call 1-800-864-5796 or www.carbuyguy.com nani 1270 Utility Trailers TRAILER SALE: 18?, 20? & 22? 14,000# Skidloader trailers, flatbeds, tiltbeds, gravity tilts, 25 to choose from. Dump Trailers 10?, 12?, 14? & 16? & gooseneck. 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During this time fo a r ate te nt r ng Court and Center Streets will be st sign cont e while Main Street Court and Cent Street will be stop sig controlled while Main Street o r nte tr et ter ts sto ign controlled top gn tr a tr Call the Broadcaster at 605-624-4429 or stop by to place your ad today! Th chang will occur on Tuesday Januar y 3, The change will occur on Tuesday January 13, 2015. ange il ccu ge ll ccur uesday n r uesda anuar uesda Jan ary , 5. We ask that an comm ts concerns, We ask that any comm nts, concerns, opinions and ideas about the at any comments, o c r s, o ments, ments, and ideas about the e ut int rsection be direct d City Hall at (605 677-70 0 intersection be directed to City Hall at (605) 677-7050 ntersection nte ect ter ct directed Cit cte ted ity a 605) 7 -705 5) 77-7050 05 or email to: info@cityofvermillion.com. or email to: info@cityofvermillion.com. o: info@cityofve illion.co nfo@cityo vermillion.com c tyo ofv llio o 201 West Cherry St Vermillion, SD 624-4429