If there’s one thing Vermillion native Kendra Gottsleben has, it’s a positive attitude.
“My philosophy is, no matter who we are or what we look like, we all have hurdles to overcome,” she said. “It’s just how we get through those with the attitude that we have, the outlook, the determination.
“You just have to make the best lemonade possible,” she said.
Now, with the publication of her memoir, “Live, Laugh, Lemonade: A Journey of Choosing to Beat the Odds,” Gottsleben is sharing her story and her sunny philosophy.
Gottsleben was born with Mucopolysaccaridoses (MPS) Type VI, a genetic lysosomal storage disorder caused by her body’s inability to produce a specific enzyme.
“That enzyme that I’m not making cleans my cells, so the difference from you to me is, you have cells and you have that enzyme that goes in there and cleans them. Mine don’t,” she said. “So they build up in my connective tissues, my vital organs, my eyes.”
As a result, Gottsleben is less than three feet tall and has to undergo a treatment once a week at the Sanford Children’s Specialty Clinic in Sioux Falls.
Approximately one in 25,000 people have the broad type of MPS, Gottsleben said.
MPS Type VI is much more rare, affecting one in 250,000, she said.
The effects of the disorder are not always the same, she said.
“There are some people that are five feet tall, but like everything, there’s mild, moderate and severe,” she said.
Gottsleben said her MPS would fall under the mild-tomoderate range.
“For me, it’s been pretty good, because there are some people that have more heart complications. I have a leaky valve, but other than that my heart is pretty healthy,” she said.
Her book is the result of two years’ work, starting with an outline in March 2010 through to the official release date of May 15, 2012 – which also was National MPS Awareness Day.
“I thought that would coincide pretty well,” Gottsleben said. “It was really cool. The company that creates the drug for my treatment wrote a story about me for their employees to announce it, and there’s a magazine for the national MPS Society that did a little piece. It’s been fun.”
Gottsleben also promoted the book with a signing at Nook ‘N Cranny in June, where she met with about 20 to 30 people.
Even though it had only been available for online sale a little more than a month at that point, she already was receiving positive feedback.
“I’ve heard a lot of people say it’s inspiring,” she said. “I’ve heard a lot of people who know me who grew up with me saying, ‘Oh, I remember when you had this surgery, or when you did this.
I remember that was a troubling or hard time for your family.’
“I’ve had really good responses,” she said. “That was the nervous part of writing the book, putting (myself) out there. But what was really cool was, somebody from Canada bought a book, and he told me that he bought it because his daughter was just diagnosed with the exact same type of MPS that I have.”
Gottsleben said this was one of her goals.
“When I was diagnosed, there wasn’t a lot of information out there,” she said.
At the time, Gottsleben was four years old.
“There was no Internet, so that information just wasn’t there,” she said.
Despite the diagnosis, Gottsleben went on to attend Augustana College in Sioux Falls, majoring in sociology.
She lives and works in Sioux Falls at the Sanford School of Medicine in the Center for Disabilities.
Gottsleben will take a short break from that next month when she has another book-signing event – this time in Nevada.
“The pharmaceutical company that gives me the treatment for my condition is going to fly me out there because so many of the employees who work to make the drugs and do the research don’t get to meet the people that they’re helping,” she said.
The event will take place Sept. 20.
“I’m excited about that because they’re doing an MPS run/fundraiser, so it’s all going into that,” Gottsleben said. “It’s like a little celebration. It’ll be fun.”
More than just information about MPS, “Live, Laugh, Lemonade” also reflects Gottsleben’s positive philosophy.
The title comes from two of her favorite sayings, the first being the old adage, “When life hands you lemons…”
“I really wanted to work that into my title, but I thought it would be too cheesy if I just used that,” she said.
Then she remembered another phrase very near to her heart: “Live, laugh, love.”
In combining the two, the title become very much a reflection of who Gottsleben is, she said.
“I love to live, and I love to laugh,” she said. “So it just kind of ended up working.”
Gottsleben’s life is about choosing to beat the odds, she said.
“The attitude we have will determine what will happen in our lives,” she said. “If we have a negative attitude, life is going to be a little dim. It’s not going to be as successful. If you have a positive attitude, you’re still going to hit roadblocks, but there is going to be positives that will come from it.
“I’ve had a lot of lemons that have been thrown at me, but so have other people,” she said. “Life isn’t perfect, nobody is perfect.
If life was perfect, it would be a pretty boring world.”
Everyone has obstacles – they’re just different, she said.
“The sooner you accept your obstacles … the better life will be,” she said.
For more information or to purchase a copy of “Live, Laugh, Lemonade,” visit http://kendrascatchykorner.blogspot.com/.
