Ewa Okla is headed to work, zipping into her office and across a tiled floor to a bank of computer screens.
She is blond, attractive and vivacious. At 32, she already has earned a doctorate.
Ewa (pronounced A-va) gets down to business as a manager for the process analytics team at Cigna, the insurance giant.
Her manicured left hand is in an elastic sling, which lifts her fingers to the keyboard on her desk. She is perched in a custom motorized wheelchair. Using four fingers, she types in a whirl of red nail polish.
“When I wanted to take a typing class in high school, the teacher tried to talk me out of it because she did not think I would be successful,” Ewa says. “Later, when I was typing faster with one hand than the other kids were with two, she apologized for assuming that I couldn’t accomplish something.”
Ewa has been proving naysayers wrong since the day she was born.
She came into the world on Jan. 27, 1984, in a hospital in Bialystok, a city in northeastern Poland, near the border with Belarus. Ewa was the third daughter for an upwardly mobile couple. Henryk, her father, was an obstetrician and gynecologist. Anna, her mother, was a nurse.
It had been a routine pregnancy and an uncomplicated birth, so her parents were not prepared when their baby emerged with clear deformities in all four limbs and other joints.
“I had been practicing medicine for 12 years, and I had never seen anything like it,” her father recalls.
Ewa was born with arthrogryposis, a condition in which joints have contractures, meaning they are permanently fixed in a bent or straightened position, severely restricting movement.
The most common congenital contracture is clubfoot, in which the foot turns inward at the ankle. In half the cases, both feet are affected.
Clubfoot occurs in one in 1,000 births, mostly in boys. The Roman emperor Claudius, the Romantic poet Lord Byron and Sir Walter Scott, the novelist who created “Ivanhoe,” all had a clubfoot. Olympic gold medalist Kristi Yamaguchi began figure skating as physical therapy for her clubfeet.
When babies are born with three or more contractures, the condition is classified as arthrogryposis multiplex congenita, or AMC.
The joints of the legs and arms are usually affected. The elbows, knees, wrists, ankles, fingers, toes, hips, back and jaw also can be impacted.
It’s a rare condition, occurring in one of 30,000 births. Arthrogryposis is genetic in origin, though there is no history of it in Ewa’s family. Scientists still aren’t certain what combination of genes is responsible for the condition or how those genes are passed on.
“I have a friend who is a twin, and one twin has it and one does not,” she says.
In Poland, there was little help for a baby with such severe physical challenges. Doctors suggested the Oklas look after Ewa at home. If she survived long enough to go to school, she would be educated with other special needs children.
“We lived in a stupid socialist system,” Henryk says. “We knew that most of the children in the school had mental disabilities and that there wasn’t anything for Ewa, who had physical disabilities but a very bright mind.”
When Ewa was 2, Henryk turned to relatives who had an exceptionally influential friend: Pope John Paul II, who had served as archbishop of Krakow in his native Poland.
The pope agreed to help, directing his staff to conduct a global search for a health system with expertise in treating arthrogryposis.
The Vatican soon responded to the Oklas with a contact at A.I. duPont Hospital for Children in Delaware, a place they’d never heard of, 4,405 miles from their home.
Anna bundled up Ewa and got on a plane. Henryk continued his work in Poland and cared for the couple’s older daughters, Magda and Anna.
“We were not sure how we would pay for her care because doctors in Poland are not rich,” he says. “Then we got wonderful news, that the Nemours Foundation had agreed to help us.”
Little Ewa spoke only Polish when she entered the hospital. Soon, she was scooting around the floor in what would be the first in a succession of wheelchairs.
During her nine-month stay, she learned English from the nurses.
“The hospital had become my second home, and I cried when it was time to leave,” she recalls. “I pretended I had a cold so I could stay one more day.”
Ewa was making such good progress, the family decided to move to the United States. They made their home in Hockessin.
Henryk, whose medical education was in Polish and Latin, would have had to complete an additional science curriculum in English, a four-year process, to remain a physician. With a family to support, he opted to work as a physician’s assistant. He later started his own business selling cars, First State Auto Associates.
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Henryk and Ewa Okla at their home in Hockessin. |
Ewa spent a great deal of time in the hospital in subsequent years. By the time she was 7, she had undergone 11 surgeries, as well as intense physical therapy.
When she was 4 she began treatment with Reenee Donohoe, a physical therapist who has since become a close friend and an advocate for people with arthrogryposis and their families.
“The goal was to get her on her feet and walking,” Donohoe says. “We started with lots of stretching—stretching her knees and legs, strengthening her trunk.”
Ewa spent so much time at the hospital that the staff made her an ID badge with her name and picture.
“She became one of us,” Donohoe says. “She was always my last patient on Fridays, and I always looked forward to seeing her.”
The team taught Ewa to walk with the aid of braces. She also got a lesson in learning to effectively advocate for herself.
“At a very early age, we taught her to orchestrate her care and to do it nicely, without being snippy, saying please and thank you,” Donohoe says. “If you are going to need assistance for a lifetime, you need to learn how to ask for help with kindness.”
Ewa relies on her parents to help her out of bed in the morning. She needs help with such routine tasks as toileting, getting dressed and bathing. At home, relatives feed her. Classmates helped at school.
“It’s very interesting, being fed by another person,” Ewa says. “When they are full, they think I am full. And if they are hungry, they keep offering me food.”
One surgery permanently straightened her left arm so that she could write. Other operations, such as removing muscle from her neck and transplanting it to strengthen her arm, were not as successful.
“Not everything works,” she says. “If you don’t try, you don’t know.”
After surgery for scoliosis, she wore a back brace for two years to correct the curvature in her spine. Doctors recommended that she rest at home for at least six months.
“I refused,” Ewa says. “I couldn’t wait to get back to school.”
She comes by that drive naturally.
“My parents have high expectations for themselves and for their children,” she says. “In our family, getting straight A’s is expected, not something special. Excellence is normal.”
Angela Delsignore first met Ewa in the neighborhood. The girls would get off the school bus at the same time. Delsignore would often see Ewa making her way down the street, walking determinedly in her braces.
“We would sit outside and eat popcorn,” Delsignore says. “Soon, Ewa was my best friend, like a sister, so funny and smart and a genuinely nice person.”
They remain close, often going to the movies and eating out. Delsignore, 29, works in New York, yet they talk or text every day between visits.
“I live a boring life compared to Ewa,” Delsignore says. “She doesn’t realize how inspirational she is. People look up to her because she has accomplished so much in a very short time.”
After Ewa graduated A.I. duPont High School, she enrolled at Goldey-Beacom College, earning a bachelor’s degree in accounting and a master’s in finance and human resources.
Even with an advanced degree, she had a difficult time finding a job.
“All I wanted was someone to give me a chance,” she says. “I would do great on my phone interview. Then I would roll in for my face-to-face interview, and everything would change.”
Afterward, she would receive a letter or follow-up call notifying her that the firm had found someone who was better qualified.
“It was crushing,” she says.
Donohoe says it’s an all-too-common scenario.
“There are many, many high-functioning people with disabilities who are frustrated because they cannot find a job,” she says. “They would much rather be working than applying for disability payments.”
A career is more than a matter of personal fulfillment.
“Ewa has to make a really good income, enough money to be able to support not only herself but also whatever equipment and support staff she might need in the future,” Donohoe says.
After scores of rejections, Ewa finally got a position at a trust company, but it did not provide the social interaction she desired.
“I was crunching numbers all day by myself,” she says. “I wanted to interact with other people.”
In 2009, she landed a job at Cigna as a claims processor, then advanced steadily up the ladder. She set a benchmark of nine months without a claim error and saved the company $1.5 million in an initiative to contain fraud and waste. She helped launch a pilot program that quickly and simply adjusts one-time claims. She also serves on the company workplace disabilities committee.
“She works a little too much,” her father says.
Her parents work hard, too. Henryk drove Ewa to and from her job in Wilmington every day, returning at least once to attend to any personal needs she might have. She works from home in her latest position. “The dedication and devotion in this family is truly extraordinary,” Donohoe says.
After hours, Ewa got a part-time job tutoring at Wilmington-based Back to Basics Learning Dynamics, sharing her love of math with students. One student soared from an F to an A in algebra and has been acing math ever since. On evaluations, parents praise her focus and connection to her young charges.
“She nurtures the students, but also pushes when it is appropriate,” says Beverly Stewart, Back to Basics founder. “She is a go-getter, and she instills that sense of confidence and perseverance in her students. Anyone who has struggled is a great role model for overcoming adversity.”
Soon after earning her master’s, Ewa decided to return to school, earning a doctorate in organizational management at Capella University.
Despite her achievement, all those years of pursuing her career and higher education took a personal toll. Along the way, Ewa stopped walking.
“For her entire life, it’s been one goal after another,” Donohoe says. “She was working full time and going to school full time. There wasn’t time for anything else.”
In contemplating the future, the Oklas must prepare for a time when they may no longer be able to care for their daughter.
“It upsets them to think about it, but it’s something we need to do,” Ewa says. “I may be the baby in my family, but I am not a baby anymore.”
She recently embarked on a two-year plan to resume walking “even if it is only between couches,” approaching that goal with the same sense of purpose and perseverance she poured into her education and career.
Ewa now swims regularly at Hockessin Athletic Club. She has an exercise plan. She is consulting with a nutritionist to lose weight. She is exploring working with a therapist to learn how to feed herself.
“I would like to live independently,” she says. “With a plan and ambition and the right support system, you can accomplish anything.”
