Skeletal problems, abnormal scars and cracking joints are all too normal for sophomore Eden Steen. These problems are something she’s dealt with from an early age, but have become more present these past years.

Eden faces many challenges daily because of a rare genetic disorder known as Loeys Dietz Syndrome. According to the U.S National Library of Medicine, there are a total of five types and are diagnosed based on their genetic cause. Eden, however, possesses none of these types. She and her mother are the only two people alive that have been diagnosed with a specific type of unknown variant. This disorder causes the body to reject collagen, which causes Eden to have less than normal amount of it in her body. This results in the popping and cracking of various joints in her body.

Christie Steen, Eden’s mother, was not surprised, but disheartened, to learn that her daughter had been diagnosed with the same thing she has lived with her entire life.

“I was not surprised [when she was diagnosed],” Christie said. “With her symptoms I knew in my heart that she was struggling with a very similar problem. I just wish that there was more ways to help her through it all. She’s too young to hurt as badly as I do already.”

People that are diagnosed with Loeys Dietz can experience symptoms in all areas of the body such as the cardiovascular system, eyes, head, neck and skin. For Eden, there is one that is more present than the others.

“My joints probably crack over 100 times a day,” Eden said. “Therefore any minor movement can easily cause them to partially dislocate. This means that there is limit to the physical activity I can participate in.”

Because of this, the subject of art plays a particular role in Eden’s life. In fact, it’s one of the few activities that she can take part in.

“Art is a huge motivator for me since it’s one of the only things I can do,” Eden said. “There are countless hours of work involved and seeing that my art makes people happy gives me a massive sense of pride.”

Fortunately, Eden’s mother is a massive supporter of all she does and has always been there to support her in all aspects of her life.

“My mom is probably where I get my love of art from,” Eden said. “She is an amazing artist who specializes in realism so seeing her made me want to develop my art further.”

Unfortunately, Eden has had some trouble with mobility in her hands, due to inflammation, which can also prohibit her from playing the French horn in class.

However, even with her limited participation she has contributed a great deal to her fellow classmates and directors in all aspects of band.

“Eden always gives 100 percent in class,” director John Keith said. “She wanted to stay involved with the varsity band even though she is not able to march so she is helping out at the water table and taking care of the band members. We really appreciate her help and desire to remain a part of the band. Eden is a great student and very dedicated to the program.”

Despite these challenges, Eden has managed to defy the odds in seemingly every aspect of her life from school, to pursuing her passion. She has created many works of art in a wide variety of different mediums, usually based around the photo-realism style. She pours hours, even months, into a piece and the end result is truly awe inspiring. Some of these have even been featured in the Millard West Lit Magazine.

“Having my art being published in something like this is pretty eye opening,” Eden said. “I have got a lot of compliments from people telling me that I have amazing talent. Everything that I submitted got in.”

In the coming years, Eden would like to incorporate some sort or artistic path into her future but there are some challenges that arise with making it a reality.

“I would like to pursue it on the side and possibly make some money off of it,” Eden said. “Being an artist also is not a very practical option because I don’t use the mediums that sell for a sufficient amount of money. However, I would love to possibly minor in it in college.”

Steen has previously made a profit on her artwork by accepting commissions and even designing tattoos for family members and friends. She also runs her own business on Etsy where she sells customizable keychains and other pieces of art.

Even after all Eden has been through she still plans on creating piece after piece of art as well as creating pieces that bring joy and even comfort to peoples lives.