Story and slideshow by NATALIE CHRISTENSEN

Meet Kirsten Morrise, her friends and family through photos.
Pierre Robin Syndrome is not a very well-known condition that is found in between one in 8,000 to one in 30,000 children born.

Pierre Robin Syndrome is a condition that comes in three stages, namely a cleft pallet, micrognathia (meaning a smaller jaw) and glossoptosis, an obstruction by the tongue from breathing.

Kirsten Morrise, a resident of Salt Lake City in the Sugar House area, has been dealing with Pierre Robin syndrome from the day she was born.

With her cheery personality and positive attitude, you wouldn’t believe the struggles this 20-year-old has gone through. She has been in and out of hospitals her whole life and  has undergone 40 surgeries. She has struggled with depression, been bullied through school and has overcome some learning struggles.

At a very young age she had a tracheotomy placed on her throat. Not only was this a burden for young Kirsten, but also for her mother Lisa who was taking care of two other children with medical needs.

“Kirsten was very sick and we were basically running an ICU and Timothy (her brother) was bouncing off the walls, and Michael (her brother) needed breathing treatments,” her mother Lisa said. “She was in the hospital 16 times her first year.”

Lisa said it was by the grace of God that she made it through that first year. Even with her two older boys needing help, having a child with a tracheotomy meant she needed to be at Kirsten’s bedside at all times.

When Kirsten had her tracheotomy removed at the age of 1, Lisa was able to return to work while neighbors watched Kirsten. Soon after however, problems started rising again.

“There were days when she couldn’t walk,” Lisa said. “And it was very strange … and things got a lot worse.”

Because of the lack of oxygen to her brain, Kirsten was having seizures which were getting worse and worse. Even with treatment, her seizures weren’t getting any better.

“‘Kirsten is sick get over it,’ was basically the attitude of a lot of professionals had that I talked to,” Lisa said. “But she kept getting sicker and sicker, and it got to the point where she couldn’t sit down on a couch without falling off because she was so out of it.”

As many times as Lisa tried to take Kirsten back to the hospital, they weren’t getting any help.

“And it’s like you’re running into a brick wall,” Lisa said. “It’s the scariest thing in the world to have your child be sick and have people not pay attention to you.”

Finally Kirsten was able to get the treatment but needed more surgeries.

She missed a lot of school because of the surgeries, and her social life wasn’t going very well either. A lot of Kirsten’s friends didn’t know how to treat her because of her surgeries. They saw her as being delicate rather than a normal kid.

“A lot of people don’t know what to say to me, because I’ve been through so much,” Kirsten said. “But I say they’re human. Do I really want them to be fully aware of what I’m experiencing?”

When Kirsten turned 6, she started skiing in Park City with The National Ability Center, a program that helps young kids recognize their strengths and helps build their self-esteem. The National Ability Center allowed Kirsten to participate in downhill skiing, and she had her own instructors to help her.

“My mom got me into skiing to help my upper trunk strength,” Kirsten said. “But as I got older and got better at it, it became not a pursuit (of) something to prove — I’m not delicate — but another activity I could add to my collection of talents I had.”

Kirsten went on in 2009 to win the gold medal in downhill skiing in the Special Olympics in advanced skiing.

Kirsten enjoyed skiing much more than physical therapy, it was more enjoyable and fun, and she could be outdoors. A lot of children with disabilities prefer to have their physical therapy this way, and Kirsten always looks back on the skiing experience with a lot of pride.

In 2005 Kirsten had screws put in her jaw called jaw distractors. The screws were visible on the outside of Kirsten’s face. When the screws were turned it forced her jaw forward so the jaw bone behind it could grow.

When asked if it hurt, she explained, “Yeah, you try getting the bone in your face being gradually moved forward.”

But, she added, “knowing what the end result is supposed to be makes it easier to endure.”

When she was 12, she attended LDS Brighton Girls camp. She enjoyed that summer so much she went back a second time and then finally went back as a helper in the kitchen in 2009 and then worked as the Craft Shack in 2010.

Kirsten loved it so much because the people there didn’t treat her like she was a disabled person. “They treated me like I was a human being,” she said. “There I had a blank slate, no one knew about my past … they let me do everything that everybody else did.”

Even having to wear an oxygen tank on her back as she went hiking her first year, she had fun with the girls telling them she was a cyborg.

If you ask anyone who worked with Kirsten at Brighton Camp a huge grin will come across their face.

Michelle Theurer was one of Kirsten’s good friends who worked at Brighton Camp with her. “It was great she always has something to say,” Theurer said. “So there’s never a quiet moment with her and she’s a really hard worker. Even with her limitations she’ll do whatever she can do.”

Theurer said Kirsten was always positive and was involved. She made things so much more fun because she saw them in a completely different way. “We would have time where we’d just hang out and it would be so fun to tease because she just dishes it right back at you, and she’s really ticklish.”

When Kirsten entered high school at Highland High, she was bullied by students taking her scooter and teasing her, calling her retarded and stupid.

“I have cerebral palsy and I have mood disorders, and I have hypotonia which means low muscle tone,” Kirsten said. “Those things have kind of caused with the bullying because of my posture and people look at me funny and also not being very athletic influenced the bullying.”

While attending high school, Kirsten was also going to college because of how much her surgeries held her back.

Kirsten attended Utah State University, because neither Brigham Young University nor the University of Utah sounded appealing.

“I made a plan to get to college,” Kirsten said. “And even though I got to college late, I had a plan I would get all of my high school work done by a certain time, and I would be able to function well enough to go to college.”

She picked social work as a major because she wanted to help others. “I feel like I have a capacity of empathy and I feel like I can give so much,” Kristen said.

Theurer also attended Utah State with Kirsten.

“Even though she may have challenges,” Theurer said. “She is always quick to realize that others have challenges too. She doesn’t seek for pity, but she does seek to serve others.”

Kirsten is looking toward the surgery that will fix it all. The procedure is called an End to End Anastomosis. Doctors will take out the part of the trachea that is scarred and then sew the ends of her trachea together. She went in early 2013 to Cincinnati to have the surgery done, but her throat wasn’t ready for it. So, on Dec. 10, 2013, she had surgery to advance her upper and lower jaws and tongue.

“Even though I have all these issues, I have a plan for how I’m going to do things and make sure I can do them,” Kirsten said. “I can take care of myself, I can do school, I can go on hikes, just not on big ones, and I’m a gold medalist in downhill skiing. Anything I put my mind to most of the time, I can do.”

Filed under: Medicine, Mental Health, People with Disabilities, Profiles, Science & Technology | Tagged: Pierre Robin Syndrome |