Overcoming a genetic disorder, shyness and finding her place

You can't tell by looking at me, but I'm not a normal 20-year-old. I have a rare genetic disorder, and I have limits on what I can do physically. I have to walk a lot slower than other people my age. The disorder basically causes all my vessels to dilate, which means I'm more likely to develop aneurysms.

Right now, I have a small aneurysm in my neck that is being watched. If it gets too big, I'll have to have surgery. I've already had to have two vessels replaced because of aneurysms. I had my descending aorta replaced when I was 15 and my ascending aorta replaced a year later. Now I take blood pressure medication to keep my blood pressure low so there's not so much stress on my vessels.

I didn't find out about the genetic disorder until I was 13. Once we found out, I couldn't do any contact sports. When others played contact sports in gym, I had to walk around the track instead. There I was, a 13-year-old kid, and I couldn't participate with my friends.

I had a really hard time after my first surgery. I was hospitalized for two months with tons of complications. I hated being in the hospital and just wanted to be a normal 15-year-old. When I went back to school, I had to be in a wheelchair and kids teased me about it. The teacher who helped me was not very nice. That is probably my worst memory from high school.

When I was getting ready to graduate, one of my teachers told me about Project Search, which is an opportunity for kids 18 to 22 with learning disabilities to get job experience. He thought it would be a good fit for me. At first, I wasn't sure. I didn't like being around a lot of people. But two of my teachers encouraged me to do it, and so did my mom. So I decided to apply. The application was pretty long, and there was an interview that was kind of like a job interview. When I found out that I got accepted to the program, I was really excited because they don't take that many people.

When I was in Project Search, I did three internships at Mayo Clinic Health System in Eau Claire. The first was in the gift shop doing customer service and handling data entry. The second was in the outpatient pharmacy doing customer service, and stocking and organizing medications. The final one was in Central Processing, which involved cleaning instruments and prepping blankets for surgery. I liked the first two the best. I found out I really like interacting with people.

When Project Search ended in May, I started applying everywhere for a customer service job. But I really wanted to work at Mayo. Then I saw an opening at Mayo for a registration representative. I applied and got an interview. After the interview, they offered me a job on the spot. I didn't expect that. I said yes right away. I'm really proud that I was hired right away.

I work on the Luther Campus in downtown Eau Claire. My job involves checking people in for appointments. I'm a float, so I go to different departments. I stay busy for the most part, which I like. I also really like my supervisors and co-workers. Everyone is friendly, and if I have questions or concerns, I can always talk to one of them.

When people first get to know me, I'm quite a shy person. Project Search and my internships at Mayo really helped with that. And now my job helps me get out of my comfort zone. I work at smiling at patients, greeting them and asking them how their day is going. And I think my experience as a patient makes me more comfortable asking people for all of their information when I'm checking them in. I know it has to be done, even if patients sometimes get frustrated by having to answer the same questions.

I have a younger sister, Maddie, who is 15. She just got diagnosed with cancer last year. She's being treated in Rochester, so my mom travels a lot to be with her. My family takes turns staying at the Ronald McDonald House to be with Maddie so my mom can work. It's hard, but Maddie is doing well. She just went on a Make-A-Wish trip to Los Angeles. I got to do a Make-A-Wish trip, too, going to Walt Disney World in Florida before my first surgery. So we have that in common.

I try to work as much as I can to help my mom with bills. It feels good to be able to help. Since Maddie's been diagnosed, I have been thinking I would like to work in the Cancer Center someday. I think in a way I could relate to those patients.

My family is really proud of me for working at Mayo. And I feel honored that of all the people interviewed who want to do what I'm doing, I was the one they chose. I'm honored that Mayo wants me to be part of the staff. I feel very lucky that everything has turned out the way it has.

Taylor Sturtz photo courtesy of Krissie Jacobsen, M and K Photographs.

Editor's note: Taylor Sturtz came to Mayo Clinic Health System in Eau Claire as an intern through Project Search, which provides opportunities for young adults with intellectual disabilities to get work experience. Sturtz, who has a rare genetic disorder that limits her physical abilities, completed three internships through the project before she was hired full time as a patient appointment services specialist. She shares her story of making her way to Mayo Clinic Health System and the support she has received from her co-workers.