Meet Kaili, a spirited senior in high school who has an unmatched love for dance. She embraces life with a light-hearted attitude, always finding humor in the little things and never taking life too seriously despite its challenges. Kaili, now 17, was first diagnosed with spina bifida before she was born at her mom’s 22-week anatomical ultrasound. Spina bifida is a birth defect where the baby’s spine doesn’t fully close, leaving part of the spinal cord exposed, which can cause nerve damage and physical challenges.
Kaili’s mom, Michelle, delivered Kaili on August 26, 2007. That’s when the family’s Children’s Minnesota story began. It was a quick delivery for Michelle, and Kaili was whisked off to the Neonatal Intensive Care Unit (NICU) at Children’s Minnesota. At only 36 hours old, Kaili had her first surgery to close the lesions on her back. To help Kaili heal from surgery, the family spent a week in the NICU.
Challenges and Triumphs
Over the years, Kaili has had 18 surgeries. She has been treated by an array of specialists at Children’s Minnesota during her time, including neurosurgery, neurology, urology, orthopedics, physical therapy and many others.
One of the longest stays Kaili had in the hospital was in August 2021. Kaili begun experiencing severe back pain, along with other symptoms that the care team identified as symptoms of her spine tethering, which meant her spinal cord had become attached and stuck to the surrounding tissue. Kaili was admitted to the hospital for a spinal cord de-tethering surgery to help relieve symptoms and prevent further issues as she continued to grow. Afterward, Kaili experienced an infection and ongoing leaking of cerebrospinal fluid that required another surgery for wound revision and drain placement. Kaili spent 18 days in the hospital recovering.
Remaining optimistic
Through it all, Kaili and Michelle always remained optimistic and made the best of their time. They would sometimes play practical jokes on each other or their care team, hanging funny things on Kaili’s intravenous (IV) fluid pole or in the bathrooms, and creating goofy sculptures with various hospital items. Those moments helped them get through the hard times.
“Something about this place [Children’s Minnesota] feels like home to me. It feels comfortable,” describes Kaili. “In general, the people have been wonderful despite the challenges. There’s a familiarity and comfort that’s been special to us.”
Most recently, in May 2024, Kaili developed severe and debilitating headaches that stopped her from being her normal active self. Dr. Meysam Kebriaei, medical director of neurosurgery, suggested a replacement shunt, with a new device he thought could help. The surgery was a success and helped keep the fluid levels in Kaili’s ventricles normal.
“It’s been a game changer,” Michelle said. “It meant going from being completely laid out to needing just some Tylenol.”
Discovering her passion for dance
Kaili has never let spina bifida define or constrain her. Instead, she has continued to explore her passions – first and foremost, dance.
Kaili first fell in love with dance at the age of 10. She found inspiration online when she discovered the Rolletes, a wheelchair dance team out of Los Angeles. She began attending their Rollettes Experience in the summer of 2019, and has attended every year since. These experiences and connecting with that special community helped Kaili to realize that her wheelchair has no impact on achieving her dance goals. Throughout her journey, she has met coaches and mentors that have believed in her and helped her realize her potential.
Kaili today
When asked about Kaili, Dr. Kebriaei shared: “Kaili is a remarkable human being; she has an infectious smile, an inspiring resilience and a joyful spirit. She is always dancing through every challenge with an amazing, positive attitude. “
In 2024, Kaili decided to try out for her high school dance team, the Waconia Lakettes, at Waconia High School. She became the first dancer in a wheelchair on the team and has become a student coach for the competitive team. She’s also part of the Hot Wheelz, a dance group in the Twin Cities that has allowed Kaili to grow and develop as a dancer with others who share her passion and experience.
“In school, I’m just seen as the wheelchair girl,” said Kaili. But dance has given her a new platform to express her whole self.
Kaili continues to receive treatment at Children’s Minnesota with continued follow-up appointments with Dr. Kebriaei. She plans on pursuing her passion for dance professionally after high school. Kaili is excited to see what the future holds and knows that this is just the beginning.
Kaili shared, “Passion and talent lay in your heart, not in your feet or your legs.”
Her drive and commitment has inspired those around her, including Michelle, who shared, “Kaili has taught me everything I need to know about how to dance with grace through life’s trials and tribulations. And thanks in no small part to the amazing medical team at Children’s Minnesota, Kaili is achieving dreams that I could never have even imagined for her. I am grateful every day and I can’t wait to see the places her dreams and drive will take her.”
