Meet Bella

Bella is a sweet, adventurous 11-year-old who loves music, dancing, and giving the best hugs. She lives with her mom, Johanna; dad, Carlos; older sister, Kasandra; and their three kittens, Nova, Nala, and Storm.

​

Bella has a rare genetic mutation in the DDX23 gene and complex medical needs, including Lennox-Gastaut syndrome with medication-resistant epilepsy, autism, hypotonia, cortical visual impairment, and developmental delays. She experiences daily seizures and receives private-duty nursing to help with her care and safety.

​

Her life is also full of activities she loves. In the fall, Bella plays beep kickball, an adapted sport for people with visual impairments. She takes ballet classes at Kansas City Ballet School using a supportive harness system and enjoys monthly open ice-skating sessions in Independence. Summer brings plenty of swimming and relaxing by the pool. Bella is always up for an adventure.

​

At home, she loves cuddling through Disney movies and convincing Kasandra to bounce her on the backyard trampoline. She enjoys water play in her stander and practices moving around the house with her gait trainer and support.

​

A fifth grader, Bella receives therapies at school and participates in aquatic therapy at Children’s Mercy. She is nonverbal and communicates using an eye-gaze device. She uses a wheelchair and is working hard to relearn how to walk.

​

Bella is the light and joy of her family’s life. They thank God for her every day and credit her with teaching them about love, patience, gratitude, and strength. Their love for Bella fuels their advocacy for inclusion, acceptance, and accessibility—and their determination to help her keep doing the things that bring her joy.