Special Issue 2020 Newsletter Cover Story

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 that has earned her the nickname Twinkle Toes around the Bucyrus Campus, where she’s a client.

Kayla, 26, was the focus of life-or-death attention on the day she was born, three months early, in the middle of respiratory andcongestive heart failure. “The doctors didn’tknow if she would make it through the night,” her mom, Renee, recalled, describing how she and husband Jim kept a vigil in the Neonatal Intensive Care Unit. 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,” said Renee. But instead, Renee and Jim packed up their tiny firstborn, along with heart and apnea monitors, and brought her home.

Although Kayla’s body was fragile, her spirit was tough as nails. 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 that speak volumes.

Finding an adult day care for Kayla was a challenge, Renee said. Options were limited and expenses were crushing for the Prinks, who work full-time. Renee’s boss, Sherry Husa, a St. Ann Center board member, invited her to tour the campus. “I was very impressed,” Renee said. “It was important for us to have Kayla in a faith-based environment that understands the value she has in the eyes of the Lord. The staff sees the higher purpose in caring for the most vulnerable and think of it as a privilege, just as Jim, Jamie (Kayla’s 19-year-old sister) and I do.

“We’re thankful to St. Ann Center for seeing that she’s safe, well cared for and engaged in life. And we’re very proud of Kayla,” said Renee. “She’s one happy kid.”

 

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