Dancing Through Life

Blonde hair, blue eyes, captain of the golf team, living life to the fullest in the best years of his life: the college years. But it wasn’t always this easy for Nick Hessa, senior at Morningside College. Just six years ago, Nick was diagnosed with a rare condition that would change the rest of his life.

Blue rubber bleb nevus syndrome: hearing those words was one of the scariest and most confusing sentences Nick had ever heard. His junior year of high school went from being one of the best years of his life: golfing, getting good grades, and all the girls, his life was about to change drastically.

It all started when Nick noticed how tired he was after doing normal day activities. Such activities were just a simple golf meet or a workout in the gym; sometimes even a large set of stairs would do the trick to keep him down for hours after. After a few weeks of not having enough energy for the simple tasks, Nick describes this to have become and annoyance almost and he decided to get it checked out.

“All I wanted to do was sleep all day, and I knew something was wrong. A junior in high school who was healthy and in shape shouldn’t have wanted to sleep as much as I did.”

Then became the long and draining process of figuring out what was wrong. Testing went on for months. Months of blood tests led to terrifying words “Blue Rubber Bleb Nevus Syndrome.” Blue rubber bleb nevus syndrome (BRBNS) is a rare condition that is characterized by numerous malformations of the venous system involving the skin and visceral organs. These malformations were found within Nick’s small and large intestine, eight of them to be exact. When doctors finally figured out, after hundreds of tests, that it was BRBNS, Nick said he took it in a calm manner.

“I was more relieved than anything when I found out what it was: relieved that we finally knew what was wrong with me, but scared as to what was going to happen. I knew it was a major surgery I was about to undergo.”

The next month and a half was spent in an Iowa City hospital getting blood transfusions and undergoing a serious surgery. Not necessarily the normal life of a high school junior. Nick ended up getting way behind in school being in and out of the hospital for over a month.

“As far as school work went, I had to work my butt of doing as much as I could when ever I could to keep up. As far as my social life, it wasn’t really affected. Getting healthy was what was important at the time and my friends understood that.”

Getting his body back to health was his main concern. He began working out regularly and started being aware of what he ate and put into his body. It was a long process, but a few weeks after surgery he was feeling back to normal. Many things contributed to regaining his health but family is an extremely important support system when dramatic times in health occur, and Nick realized this quickly.

“My parents were really worried at first, especially when they couldn’t figure out what was actually wrong for the longest time. Once doctors figured it out, my family was there for me the whole way. Without their support, I don’t think I would have gotten better as fast as I did. Even today, my family is the biggest reminder that I need to stay healthy.”

Today, Nick is a healthy senior at Morningside College. Looking at him now, confident, muscular, and happy, the only reminisce of the disease is a small scare about three inches long under his belly button. He currently resides as a senior on the Morningside golf team as well. Roommate and fellow teammate Alex O’neill comments on his observations of Nick’s health.

“I hadn’t even known anything happened to him til I saw the scar. He explained what happened, but nothing had given me a clue before that anything had happened to him. He keeps himself pretty healthy so I have no worries about his health in the future.”

BRBNS does have a chance of coming back, so Nick is always aware of his health and energy levels. If he ever gets to tired is a normal day activity, a red flag pops up and he usually gets his blood tested just in case. Nick describes his feelings on the return of BRBNS.

“I’m not really afraid they will come back, but just aware of the possibility and try to stay as in shape and healthy as a can in the mean time.”

Nick is now focused on his future. About to graduate in May with a finance degree, the future has unlimited opportunities for him. Not many people can say they have had a disease that has only 153 known cases in the world, but Nick doesn’t let that hold him back.

“I have a lot of goals and things I want to do in my life, and I know now that I need to stay healthy in order to accomplish these things. Through this whole experience, I learned to live everyday to the fullest. Anything can happen when you least expect it, therefore your health is something that should be taken differently and never ignored.”