Eleven-year-old Addison’s journey at Children’s Minnesota has not been an easy one. Born with spina bifida and hydrocephalus, she has had to fight for her life every step of the way, but she does so with a huge smile on her face.
Addison’s spina bifida and hydrocephalus were diagnosed before birth. And while her family was unsure of what her life would be like after birth, they knew that they had a great team at Children’s waiting to welcome her into the world. After she was born, she began to experience apnea spells, seizures, and even coded for 21 minutes, meaning her care team fought for Addison’s life for 21 minutes bringing her breathing back and making her heart beat on its own again.
As a child with complicated health needs, Addison spends a significant amount of time at Children’s. Just about everyone at the hospital knows her, and she gives everyone she encounters a smile.
“Our experience with Children’s is family – it is deep and extremely meaningful. We would not be here if it wasn’t for Children’s. They have saved her life more times than we care to count,” said Melanie Lees, Addison’s mom.
Finding Miss Nina
Due to the code she experienced in infancy and her current medical conditions, Addison has developmental delays and Cerebral Visual Impairment, meaning her brain has a difficult time processing what she sees. Because of this, it’s hard for Addison to embrace new things. For example, she and her family watched the same movie for years.
“She loves the book Brown Bear, Brown Bear, What Do You See?, so in an effort to watch anything besides Baby Einstein, we searched Brown Bear on YouTube to see what we could find. And low and behold, we found ‘Brown Bear Rap, by Miss Nina’ and her love for Miss Nina began.” Melanie recalled.
Reluctantly, she watched that video until she became comfortable with it. They then ventured to the next, until over time Addison was able to navigate and look at news videos alone. Next thing the Lees family knew, Miss Nina was a household name.
Watching Miss Nina’s videos has helped Addison expand her boundaries and learn new things. From watching videos like the Happy Llama Song and Baby Shark, Addison learned new words, songs, colors, sign language and could move her body in new ways. These videos have even helped her learn how to use a fork and eat independently!
Beyond learning to use her body more, Addison sang more, and even spoke more. “Miss Nina helped her discover her voice. A child that didn’t really do or say much started to expand her entire world through song,” said Melanie.
Addison’s love for Miss Nina’s videos ran so deep that her physical therapist, Kristin Penney, and occupational therapist, Erin Dedrich, at Children’s Maple Grove rehab clinic incorporated them into her therapy as a reward. They always told her: “work hard, then Miss Nina.” Kristin then had the idea to reach out to Miss Nina to see if she would meet with Addison in person.
“It was a magical coincidence when Kristin reached out,” said Miss Nina, who had moved to Maple Grove just five months before being asked to visit with Addison and her family.
“Work hard, then Miss Nina”
At one of Addison’s occupational and physical therapy appointments on Oct. 15, Miss Nina surprised her and joined Addison, Kristin and Erin in song. They sang many of Addison’s favorites like, Little Bunny Foo Foo, Ba-Rump Went the Little Green Frog and Brown Bear Rap.
More videos of Addison and Miss Nina:
When asked what this experience meant to her, Miss Nina said she was surprised and incredibly moved to find that her videos had been a motivation and reward for Addison’s therapy. “Well, I was blown away,” explained Miss Nina. “I’ve put my music and videos out in the world in the hopes of reaching, helping and bringing joy to children, but when I hear that it’s actually happening, that my work is actually having a positive impact? I’m overwhelmed with gratitude and happiness.”
This surprise visit meant a lot to all involved. To Addison’s family, it reaffirmed that they are not alone on their journey of navigating Addison’s complex health needs; Children’s, and community members like Miss Nina, are along for the journey, making sure that Addison knows and finds joy.
Addison’s favorite thing is to be with the people she loves. When she spends one-on-one time with loved ones, she calls them “momma days,” “daddy days,” “Chase and Hannah days” (her sisters), and “Stacia days” (her nurse). And now she can add “Miss Nina day” to her list!