Get to know Andrew & Katherine Sartorius: Building a family and living life with albinism.
Chemistry In The Making
When Katherine Hoffman (now Sartorius) got the call from her new chemistry tutor at Rockhurst in 2007, little did she know the man on the other end of the line, Andrew Sartorius, would be her future husband and father of their child.
When Andrew was a junior, he had heard from everyone — from fellow students to the janitor — about Katherine, but being the self-proclaimed “bonehead” that he was at the time, he quickly brushed it off, saying, “No way!” He recalls the janitor saying, “Andrew, there’s a girl with white hair . . . you’re going to marry her!”
“We can’t even make up that cliché,” Katherine says laughingly.
Drawn together like a proton and electron, the two formed a bond that has manifested into a life neither had ever imagined: sharing life as a married couple with albinism. “We can’t even make up that cliché,” Katherine says laughingly.
Life In JCMO
A job opportunity with the public defenders’ office had brought the two to Jefferson City. Andrew, originally from St. Louis, wanted the experience, and Katherine, from Trenton, Missouri, knew jobs would be more readily available within her industry than Andrew’s. Andrew landed the job in September of 2014, and they were married that September. Then, in November, Katherine accepted a position at Capital Region Medical Center, where she now works as a doctor of physical therapy focused on pelvic floor treatment. Once she passes the certification exam later this year, She will become the only physical therapist in Jefferson City, who is certified in pelvic floor rehabilitation. After two years at the public defender’s office, Andrew opened his own law firm, Sartorius Kirsch LLC, located at 300 High St., where he practices criminal defense and is a guardian ad litem. At times, you may find him on Lincoln University’s campus, where he’s a part-time professor of political science and criminal justice.
Each morning, Katherine bikes to work, and Andrew walks to his office from their home on Elmerine Avenue, since both are legally blind and unable to drive. On bad-weather days, they’ll utilize Uber, Lyft, or phone one of their colleagues for a ride. “When we first moved here, transportation was the hardest thing because Uber was prohibited by law.” Nowadays, even though they’d like to see the Greenway extended their way, they’ve found many things to love about Jefferson City.
“Jefferson City is amazing because we have a lot, given the size we are. For example, we have a symphony. Opportunities exist here that don’t in bigger cities. I was able to build a law firm, and that’s something that would be much more difficult in St. Louis or Kansas City. We found this awesome house in this awesome neighborhood, and anything close to this would cost three to four times what it is here,” Andrew says. Mostly though, it’s the community that they enjoy. “People are welcoming. They want to know you,” he says. They also love living on Elmerine, where being welcomed with muffins and regular block parties is still a part of neighbors’ lives.
It Takes a Village
Today, their house is active with a new baby and a dog, but not nearly busy enough for Andrew, who wants several more children. Katherine, being a bit of a commitment-phobe, took her time deciding to make the leap into motherhood. “We had traveled to new cities, I wasn’t a new grad anymore, we had bought a house, and living in this neighborhood — I could [finally] see it. I knew I just had to meet all the requirements,” Andrew says. Although he admits, while looking at Katherine: “I never wanted kids up until I met you. I know that’s going to sound hopelessly romantic, but I never saw that as part of my future until you became part of my future, and then I realized this is somebody with whom I’d like to have kids. We had been dating for two to three years when I made that decision.”
Their first (fur)baby, Rosie the Capital City Goldie (#rosiethecapitalcitygoldie), has been warming up to baby AJ now that he’s becoming more mobile and can offer her food as it drops to his lap while he eats. AJ attends the Special Learning Center and also has albinism. “When we decided to have kids, we didn’t know if they would have albinism or not,” Andrew explains. “That’s because there are lots of different types. If you think about what makes pigments, it’s like one big assembly line and each gene is one machine on that line. If my first gene is broken and Katherine’s second gene is broken, then all of our kids will carry both, but not have either. There was about a 50/50 shot of us having kids with albinism. Now that we know that we have the same type, we know all of our kids will have it”.
The two rely on a village of family, friends, and neighbors who pick AJ up every day and help them run errands. Katherine can’t wait for AJ to get a little older so he can join her on the bike in the pull-behind. “We want him to be a good human, be kind to other people, help people that need help, and be a good friend,” Katherine says. Andrew wishes for AJ to be a “life-long learner, have a thirst for knowledge, and to know it doesn’t matter what you do or how much recognition you get — do something that makes you happy.” Andrew believes the coolest things are yet to come. “What’s his sense of humor going to be like? Is he going to like the things that I like or like the things that Katherine likes?” Quickly he adds, “Hashtag: it’s gonna be me!”
On Albinism
Sharing the common genetic recessive condition called albinism, Katherine and Andrew have valuable perspectives on teaching others, how words define or don’t define you, and about living everyday life. Andrew says: “Albinism, to a certain extent, does define me. Most of the time, people can hide their challenges. Albinism is not something we can hide. We literally wear it all the time, and people are always asking, ‘Are you one of them albinos?’ or, ‘What’s wrong with your eyes?’”
“I always feel like I’m teaching. I have to try to approach people where they’re at and use it as a learning experience. We can take it one of two ways: We can get offended and angry, or we can be like, ‘Oh yeah, we have albinism, and we can talk to you about it.’ It has definitely given me unique tools to be an excellent trial attorney and good professor.”
What advice do you have for people who feel shy or uncomfortable about speaking to you about Albinism?
“Ask. If you ask a question and it comes from a place of curiosity, we’re never going to be offended or upset.”
“‘Albino’ is scientifically accurate,” Andrew says. “I have no problem with it, but some people do. In disability rights communities, there’s a big push for what’s called people-first language. This means you always put the person first in the sentence structure. You’re a person with albinism, not an albino. They somehow believe this is more dignifying, and it perhaps is. However, I’m of the opinion that we need to own the word. Lots of times, words can take on a new meaning that’s not intended . . . . Others steal a word, use it for bad, and then now it’s a label instead of a description. I feel the only way to fight that is to not let people misuse the word. If someone says, “Are you an albino?,” I don’t take offense to it, but some people do, so be warned.”
Katherine is outfitted by Hello Belle. Andrew is wearing a seersucker suit from Samuel’s, and Rosie’s bow tie was provided by Premium Pets.
What is Albinism?
Albinism is an inherited genetic condition that reduces the amount of melanin pigment formed in the skin, hair, or eyes. Albinism occurs in all racial and ethnic groups throughout the world. In the U.S., approximately one in 18,000 to 20,000 people have some type of albinism.
A common myth is that people with albinism have red eyes. Although lighting conditions can allow the blood vessels at the back of the eye to be seen, which can cause the eyes to look reddish or violet, most people with albinism have blue eyes, and some have hazel or brown eyes. There are different types of albinism, and the amount of pigment in the eyes varies. However, vision problems are associated with albinism. source: albinism.org
Albinism Quick Facts
Vision is not correctable, but functional. It’s like looking through the opposite end of a pair of binoculars. People with albinism can see everything you see; it just seems further away. People with albinism could potentially have the same visual acuity as people without.
People who carry the gene for albinism have a 1 in 4 chance of having a child with albinism.
For people with albinism, either all their children will have albinism or none of them will.