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Caelonda's Story


Caelonda first became a part of The HSC Pediatric Center family as a bright eyed six-month-old when she was admitted for ongoing medical management. While Caelonda was born with a genetic motor neuron disease that significantly impacts her ability to move her muscles, the disease does not affect her cognitive functioning. She also has a tracheostomy and requires the support of a ventilator to assist with breathing.

Caelonda spent the majority of the first two years of her life as an inpatient at HSC. Once she was medically stable to leave, her mother determined that she was unable to care for Caelonda at home due to her complex medical needs. As a result, Caelonda was discharged to a group home in Maryland. After Caelonda was discharged to the group home, she transitioned to The HSC Pediatric Center’s outpatient therapy program and returned to the hospital twice a week for therapy services. However, Caelonda’s family reported that it was difficult for them to visit her in Maryland. At the time, The HSC Pediatric Center was planning an inpatient program for children with chronic, complex medical needs that were difficult to safely manage in the community. When her mother heard this, she “wanted her baby to come home to HSC.”

Caelonda has thrived in this therapeutic program, where she receives occupational, physical, recreational, and speech therapies. She also receives interventions from child life specialists and attends school in the community. She enjoys participating in developmentally appropriate peer groups, pet therapy, special events, and playing with her dolls. Due to Caelonda’s disease she has very limited control of her muscles and has difficulty communicating verbally, but don’t let that fool you! Caelonda is a typical six-year-old who loves playing dress up, coloring, painting, and playing games, she just requires the use of assistive technology to help her access her environment – and has learned to communicate through the assistance of a specially designed computer system that she controls solely with her eyes.