“Hope has always been a woman unto herself,” says her dad, Kevin Youngquist. “She’s not one to back down from a challenge or a task when she can very well do it on her own.”
Hope’s independent streak began seven years ago. With a C-section scheduled on her dad's birthday, January 18, Hope had other plans. She entered the world one week prior on January 10—her mom, MariAnne’s, birthday.
“That was the start of a fiery girl called Hope,” says Kevin.
Kevin also describes the day of Hope’s birth as surreal; a flood of emotions. She’s the family’s second child, but the first to be born with multiple pterygium syndrome—a genetic condition she shares with Kevin.
“I saw a beautiful baby who happens to share my same medical condition,” Kevin says, reflecting back on that day. “All my life's experiences up to that point—navigating physical differences, overcoming labels and stereotypes, or working to be a proactive part of the greater good—I knew she would cross those same hurdles and build those same bridges in her own way. It was a very humbling experience.”
Hallmarks of multiple pterygium syndrome include scoliosis, short stature, joint contractures and webbing of the skin around the joints. Kevin likes to throw in a few other characteristics too, when he’s describing himself: “Good sense of humor, pretty handsome, things like that.”
Besides independence, Hope’s defining characteristics include a love for animals—she wants to become a veterinarian someday, and own a Pug—and an inclination to stick up for other kids. “When one kid isn’t treating another very nicely, Hope will step in,” Kevin says. “She is stalwart in being a peacemaker and lights up when she can do something to help.”
Hope and her dad have something else in common besides a medical condition. They’re both Gillette Children’s Specialty Healthcare patients. Kevin received care at Gillette throughout his childhood and teenage years before moving west to attend college in Idaho. He and MariAnne moved back to Minnesota before starting their family and Hope became a patient before her first birthday.
“I am convinced that we were divinely brought back here for the resources at Gillette,” he shares. “It brought it full circle.”
Surgery prep, designed with kids in mind
Hope underwent her first surgery at age 4. Peter Kim, MD, untethered her spinal cord to alleviate tension that could have aggravated her scoliosis. “We feel like that untethering cord surgery, for Hope, has relieved some of the dramatic increase in curvature,” Kevin explains. “I’m constantly learning more about the impact of tethered cord.”
Metal rods in Hope’s spine, which are adjusted as she grows, keep her scoliosis from worsening. So far, she’s had five surgeries to adjust the rods. Steven Koop, MD, monitors her curve on a regular basis and performs her growth rod adjustment surgeries.
“There is absolutely no heaviness to the anxiety that Hope feels going into surgery. She knows Dr. Koop will mark her back where the surgery will take place. She knows she’ll be met by nurses who are excited to see her, and that she’ll have juice, activities and movies when she wakes up,” Kevin says. “The emotional support is there.”
Proud big sister
Hope has an older sister, Hannah, and two younger brothers, Noah and Peter, who don’t have multiple pterygium syndrome. Her baby sister, Jane, was also born with the condition. Hope dotes on her little sister, always asking to hold her, feed her or help however she can.
Now a father of five, Kevin often reflects on parenthood and his role in guiding his children as they develop their own worldview and sense of self. After all, he remarks, “They don’t send you home with a manual on how to be a good dad.”
“Now that I’m a father with two children who have this condition and knowing what it’s meant for me—I’ll be able to shepherd them in their path, and give them tools I’ve learned throughout my own path,” he adds. “I’m fascinated by the idea that what we deal with can help shape who we become, but doesn’t, in any way, limit our potential.”
Kevin and MariAnne teach Hope—and all of their children—that the only limitations they face are ones they impose on themselves. Kevin teaches by example and it’s clear that if someone were to write a ‘Good Dad Manual,’ he’s the guy for the job.
“I look at my daughter Hope and I see what she is capable of,” says Kevin. “She does great things right now and only more amazing things are to come if we buy into that vision of ‘I can do whatever I set my mind to.’”