Kayla Beats the Odds

If you want to know where the action is at St. Ann Center’s Young Adult Unit, just look for Kayla Prink. The 4-foot-tall, 60-pound bundle of energy has a passion for dancing and a perfect pirouette that’s earned her the nickname Twinkle Toes. “She’s very inquisitive,” says Kayla’s mom, Renee. “And usually right in the middle of things.”

Kayla was the focus of life-or-death attention on the day she was born, three months early, in the middle of respiratory and congestive heart failure. “The doctors didn’t know if she would make it through the night,” Renee recalls, describing how she and husband Jim kept a vigil in the Neonatal Intensive Care Unit, watching their newborn swaddled in a tangle of tubes and monitor wires. A week later, a geneticist determined Kayla was among the one in 10,000 infants born with Cornelia de Lange Syndrome (CdLS), a rare genetic disorder that can lead to a variety of physical, cognitive and medical abnormalities.

“The doctors didn’t expect her to live out the year and recommended she be discharged to a hospice,” says Renee. But instead, Renee and Jim packed up their tiny firstborn, along with heart and apnea monitors and tube feeding equipment, and brought her home to the nursery they’d lovingly prepared. “We wanted to give Kayla the best chance we possibly could,” says Renee.

Although Kayla’s body was fragile, her spirit was tough as nails. Last year, she graduated from Ben Franklin Elementary School in Menomonee Falls at the age of 21. And while Kayla is unable to talk or perform self-care skills and is legally blind, she’s blessed with sparkling eyes and a Mona Lisa smile that speak volumes.

Finding an adult day care program for Kayla was a challenge, Renee says. Options were limited and expenses were crushing. Aware of the situation, Renee’s boss, Sherry Husa, a St. Ann Center board member, invited her to take a tour of the Stein campus. “I was very impressed,” says Renee. “Your caregivers are the best. They remember Kayla’s likes and dislikes and her unique traits. It was important for us to have Kayla in a faith-based environment. St. Ann Center understands the value Kayla has in the eyes of the Lord, and how much she’s loved by her family and our God. The staff sees the higher purpose in caring for the most vulnerable. They think of it as a privilege, just as Jim, Jamie (Kayla’s 15-year-old sister) and I do.”

This fall, Kayla will join the young adult day program at the Bucyrus Campus, a quick 5 minutes from her father’s workplace. This time, the Prinks aren’t worried a bit. “We’re very proud of Kayla,” says Renee. “And we’re thankful to St. Ann Center for seeing that she’s safe, well cared for and engaged in life. She’s one happy kid.”

Kayla’s story is just one example of how your connection to St. Ann Center helps enhance the lives of so many special people. In the October-December issue of Season’s of Life, you will find more stories of the difference you and people like you are making for the people of all ages and abilities at St. Ann Center every day, plus check out upcoming events and life enrichment opportunities open to everyone.