Olive Shelso Embraced by a Community of Caring as She Fights Rare Disease

Loving parents and a supportive community help a 4-year-old live with a rare disease.
Olive Shelso with therapist Megan Voss in one of her weekly therapy sessions at Gillette Minnetonka Therapies clinic.

Four-year-old Olive Shelso loves music, playing with her family’s two Chihuahuas—Ammo and Tank—and giving hugs and kisses to everyone she meets. Reflecting on her daughter’s outgoing and personable nature, her mother Dana Shelso laughs that Olive “knows how to get what she wants.” Born with an extremely rare chromosome deletion, this smiling preschooler hasn’t had an easy childhood so far. Before Olive was born, parents Dana and Troy Shelso discovered she had a serious heart condition for which she would need multiple surgeries. Then, when Olive was three and a half years-old, they found out she had additional abnormalities in her brain and spine that were causing significant developmental delays.Doctors at Gillette Children’s Specialty Healthcare in St. Paul diagnosed Olive with a Chiari malformation, in which the back of the brain pushes into the upper spinal column, and a tethered spinal cord, meaning her spine was attached to the tissues surrounding her spinal column. In order to address the issues and prevent further development delays, Olive had two simultaneous neurosurgeries at Gillette in December 2012. Soon after, she also received a shunt to treat hydrocephalus—excess fluid in her brain.Now working to develop her balance, coordination and motor skills, Olive is also learning sign language and has improved substantially since her surgeries. In addition to her weekly therapy sessions at Gillette Minnetonka Therapies clinic, she has received treatment for the last three years through Help Me Grow, Minnesota’s early intervention program. Help Me Grow provides in-home speech, physical and occupational therapy to eligible children. “Olive loves her therapists and they’re all like family,” says Dana Shelso. “They even come to her birthday parties.”Throughout Olive’s journey, Shelso and her husband have received support from their families and friends, their hospitals, Minnetrista schools, the Make-A-Wish Foundation of Minnesota and their employers, who have been accommodating with Olive’s surgical and therapy schedule. “We have both been able to keep our full-time jobs because they are so flexible about our family’s special situation,” Dana Shelso says.The Shelso family also received financial support from a fundraiser in Olive’s honor. When Olive was just 3 months old, Dana Shelso’s great-aunt organized a benefit in the bowling alley she co-owns with her sister, Shelso’s grandmother. The event collected enough money to help pay for Olive’s month-long stay at Amplatz Children’s Hospital after she was born. As an infant, Olive had open-heart surgery, heart catheterization surgery and countless other procedures.During Olive’s 2012 stay at Gillette, the Shelsos relied on Olive’s grandparents for day-to-day encouragement and organization. “They ran clean clothes and food to the hospital, and just came to keep us company,” Shelso remembers. The family also found the expertise and compassion of the Gillette staff to be a huge comfort. “One of the last nights we were in the PICU [pediatric intensive care unit], Bobby, one of the nurses, stood at Olive’s crib all night so when she would wake up confused or upset, he could calm her down and I could get some sleep,” Shelso says. “You can tell they care about the whole family.”Although Olive will continue to need surgery—at least one more for her heart and periodic adjustments of her shunt—she is growing up as any other little girl would. When not in physical therapy or with her family, she goes to preschool and will start attending with her para-therapist three days a week this fall. “She likes people and other kids a lot,” Shelso says. “We’re really looking forward to kindergarten.”