MILWAUKEE (MCT) -- For the second time in her life, Tessa Koller sat in a hospital examination room listening to a doctor deliver bad news. A defect in her coronary artery required surgery. She was 25. Tessa heard the doctor say something about "sudden death in young people," and her mind went elsewhere.
She'd lived with heart disease all her life, gone into surgery as a 10-week-old infant, endured years of mysterious blackouts, breathing problems, learning delays and depression. Now there would be a second surgery. She imagined the scar, the pain radiating through her rib cage. If she survived the procedure, she would never make it through recovery, not with her weak immune system.
Later on that night in March 2009, Tessa lay in bed, her mind running through scenarios that would end in her own extinction. She thought of a best friend who'd died young. "I was thinking how she beat me to the grave at 22," Tessa remembers.
At 4 a.m., she awoke from a nightmare in which her dead friend had spoken to her. Tessa rose and began cleaning her Milwaukee condo, digging through her closet. There, scattered among old sketches from high school and college, she found photographs of her mother's garden in St. Charles, Ill. The flowers in the photos looked so beautiful. She had always meant to paint them. At 7 a.m. that morning, she got out her paints. She set up the easel in the bedroom.
For the next five months, she woke around 5 a.m. each morning and painted and sewed until 10 or 11 p.m. at night. She rushed to fit a lifetime into whatever was left. She had dreamed of becoming a fashion designer, so she designed outfits and sewed them.
"I feel like all of this kind of saved me," she says.
From birth, Tessa's story kept coming back to what she could and could not do. At ages 2, 3, 4, she couldn't eat well. Her speech was distorted. She couldn't walk. She had poor muscle tone. In her high chair, though, Tessa would spend meals finger painting patterns with spaghetti sauce. She loved nature. She loved music. The health problems never went away. In her first six years of life, she went to the hospital more than 30 times. In grade school, she had difficulty communicating and working with other children. She felt frustrated, but never allowed herself to cry. Crying, she told herself, was giving up. Sometimes she would push other kids off the easel so that she could paint.
Despite her learning delays, when she was 7, 8, 9, she wrote stories and illustrated them.
In one, Tessa is walking the family cat on a leash and crying. The next drawing shows Tessa standing behind double doors staring through a circular window. She sees the cat lying on a table, paws spread out, a line running down the middle of its chest.
The cat is in surgery. By the story's end, the cat is transformed. It is now Tessa. She is all patched up after an operation. The book was how she told the story of an operation she'd been too young to understand or remember.
Another time she went horseback riding. For a week after she came back, she made squiggles on a page. Tessa's mother, Margie Koller Podjasek, would look at the page baffled. She almost threw it away. Each day Tessa added new squiggles. Gradually shapes emerged. After a week, her mother saw what the picture was: horses.
"She worked a lot of things out through drawing," explained Podjasek. "She couldn't say it, but she could draw it. That was her main way to communicate."
Most of her life Tessa did not know why she was sick. She had heart problems -- the early surgery was to treat a hole in her heart and an abnormal formation of the aorta. But these didn't seem to explain the learning delays, the speech difficulties, the weak immune system.
When Tessa was a teenager, she attended a boarding school for children with learning disabilities. As Tessa approached graduation, her mother asked the guidance counselor what Tessa would do after school.
"Well," the counselor replied, "she's damned good at art." They began looking at art schools and Tessa received a scholarship to attend the Milwaukee Institute of Art and Design. At MIAD, her health problems continued. She would pass out in her studio.
Finally her mother took her to Children's Hospital and in March 2008, she received a diagnosis. It was the first time a doctor looked Tessa in the eyes and delivered a jolt of mortality. She had 22q11.2 deletion syndrome, something missing in a chromosome.
Tessa heard the doctor say the disease's name, then everything went black. Her eyes were open; they saw only darkness.
Despite its strange name, 22q11.2 is not rare. It is one of the most common disorders involving chromosomes, those strands inside the nucleus of each cell that carry our genetic information. An estimated 1 of every 4,000 babies is born with 22q, as the disorder is often called. It may be twice as common as estimated. Tessa had never heard of it, and for 24 years, no doctor had tested her for it.
"It's a really common problem and it's commonly missed," said Jack Routes, chief of the Division of Asthma, Allergy and Immunology at Children's Hospital and the Medical College of Wisconsin. The syndrome involves the deletion of several genes on Chromosome 22, especially one called TBX1. This gene plays a crucial role in early development, serving as a kind of band director in a process that ferries different cells to different places in the body. The cells develop into everything from the kidneys and heart to the palate.
This is one reason why the syndrome is difficult to recognize. Symptoms seem to be all over the map. Many children have forms of congenital heart disease. Some have palate problems. Some have speech problems. Some have developmental delays. Seizures. Depression. Schizophrenia.
Adding to the confusion, the disorder has been known by different names including DiGeorge syndrome, velocardiofacial syndrome and Shprintzen syndrome. Severity varies, too. There are people with 22q who live to old age; others die at birth.
The defective gene cannot be fixed. However, early diagnosis allows doctors to treat many of the diseases caused by the disorder before they become life-threatening or debilitating. That's why Routes believes Wisconsin should test for 22q as part of its newborn screening program.
After her diagnosis, Tessa sank into depression. It was months before she could bring herself to search the Internet for information on the disorder. She had finally adjusted to the news about 22q when the doctor said he needed to take a CT scan of her heart.
The scan revealed the defect in her coronary artery and led to the scene in the examination room when the doctor told Tessa she would need her second heart surgery.
Although she did not need surgery, Tessa must be careful with her health. She cannot run fast, though she works out on a treadmill for 20 to 40 minutes a day. She is restricted to a bland diet. In January 2010, a gallery in Milwaukee showed a handful of her paintings. The same year she created her first clothing line. She began selling her clothing at stores.
Third Coast Style, a clothing and art boutique, has sold some of her designs. In 2012, she held her first big runway show at Milwaukee's Astor Hotel and exhibited several oil paintings there as well.
Tessa's mother and stepfather have helped her spread the word about 22q by establishing the nonprofit "Tessa Koller Knowledge Is Hope" fund. The fund helps young people with the disorder make the transition to adulthood.
Tessa likes to think that there is something in art and fashion that can help others. She puts it this way:
"I want people with my condition to have opportunities to model and to feel beautiful and just to be happy in their skin."