Tessa Koller, owner of Tessa's Tailoring and Alterations
This week, Off the Cuff interviews Tessa Koller, owner of Tessa’s Tailoring and Alterations. Koller is also affected by a genetic disorder known as 22q11.2 deletion syndrome, which is related to anomalies down the center of the body; the disorder has more than 200 associated symptoms, including heart and lung disease. Although 22q is nearly as common as Down Syndrome, it is still relatively little known to the general public. Koller has devoted her life to raising awareness of 22q in the media and using her abilities to encourage and give hope to those affected. She is also a regular online writer for Arianna Huffington’s new wellness company, Thrive Global, and the digital health community The Mighty. Here, we discuss her advocacy work, 22q at the Zoo Worldwide Awareness Day (Sunday, May 20), her love of fashion and the importance of a positive mindset through adversity.
Please tell me about your advocacy work for 22q.
Every year, I travel with different organizations I’m working with. The 22q Family Foundation is national, but they do a lot of events here in Wisconsin. We do these events to take the mystery out of 22q and to educate the public, as well as doctors and specialists. I wasn’t diagnosed with this until I was 24 years old. I went my whole life not knowing the name of it, not knowing what it was. I had always thought heart disease was my primary and pretty much only problem.
I only do fashion shows through 22q organizations because it’s the way I can give back. The International 22q Foundation is stationed all over the place—China, Australia, Italy, Ireland, Sweden—and I travel with them. It’s the strangest thing doing these fashion shows in the middle of the conferences, but it’s an interesting way to attract international press. I think the more information about the syndrome that’s available, the more parents and families who are affected by it will feel like, “Oh, my kid can do this, too.”
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Please tell me about your decision to open your own business.
In 2015, on the Christmas holiday, my lung collapsed. It happened on an airplane flying between the East Coast and Milwaukee. I was in and out of consciousness by the time it landed and was rushed to the emergency room. Two days later, I found myself having lung surgery and with two large tubes coming out of my chest. By February 2016, I was diagnosed with chronic pain, Fibromyalgia and another condition relating to the lung. For more than a year, I was in an intensive physical therapy program that I still do daily, but sewing, creating outfits and even tailoring and alterations are like therapy to me. They’ve become my way of life and how I survive. Before the lung collapse, I was taking classes with a seamstress, and when I made the decision to come back to fashion, I wanted a business. I wanted to be really making money and actually supporting myself.
One of Tessa's designs
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Tell me about the 22q at the Zoo event being held in Milwaukee.
The people who organized it are a couple. Their names are Eric and Jenny. It’s to support their daughter, Audrey Hohenwalter, who has 22q. Similar events are happening on Sunday, May 20, in 20 or 30 other countries and also in more than 50 cities throughout the U.S. The events allow families to get together and spread awareness about the syndrome. These events are resources for families that don’t have a lot of financial backing for support and help, and it’s just a great network. Press events really give people the right information about the syndrome—what it is and what to expect if you have it. The way you deliver this information is critical. These events put parents, children and young adults at ease.
What is the most important thing for people facing a 22q diagnosis to know?
I want them to know that you are far more than your diagnosis. You are far more than the compilation of all your struggles, and all your symptoms, and all the things that you feel hold you back. By focusing on how you view yourself, your abilities and the things that really make you who you are, aside from your health, you’re going to be OK. And it doesn’t have to be scary and dark all the time. You can have the syndrome and you can have really great friends and a great life and find a way to do something that you love. And that’s really what makes life good. It’s the small things more than any big thing that makes life really good.
To learn more about Koller and her work, visit tessakoller.com. For more about the 22q Family Foundation, which offers free educational support, scholarship consultation and career coaching for young adults, visit 22qfamilyfoundation.org. For more on the International 22q Foundation, which connects 22q families across the world, delivers cutting-edge information and organizes events for 22q at the Zoo Worldwide Awareness Day (Sunday, May 20), visit 22q.org.
