When Willow was a baby, her parents noticed concerning signs. She struggled with muscle control and missed developmental milestones, leaving her family searching for answers. After months of inconclusive tests at Children’s Mercy, genetic testing revealed she had 22q duplication syndrome, a rare genetic condition that varies widely in how it impacts development.
Insurance did not cover the diagnostic testing initially, but donor support stepped in to make it possible. This diagnosis served as a turning point, providing the family access to specific therapies that paved the way for Willow's development. Her parents eventually moved closer to Kansas City to ensure she had consistent access to specialized care and inclusive community resources.
Now six years old, Willow is a first grader in an autism-specific program. While she is nonverbal, she communicates her joy and personality clearly through music and interaction with others. Her parents have seen her reach milestones they once questioned, including learning to walk and now practicing how to run. She remains a thrill seeker who spends her summers at an accessible splash pad, living a life defined by her own growth rather than medical limitations.
Willow’s father, Andrew, emphasizes that donor support changed their family's trajectory by removing financial barriers to care. He encourages others to consider the impact of these contributions on families facing similar diagnoses. Through ongoing therapy and community support, Willow continues to prove that a diagnosis is just one part of her story as she works toward new goals.