A Virginia family is demanding answers following the tragic death of their 4-year-old daughter, who passed away just days after an incident at her Frederick County public school.
Feeding tube incident at school
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The backstory: Faith Johnson, a student at Northwestern Regional Education Programs (NREP), sadly passed away on Saturday at UVA Hospital in Charlottesville.
According to her family, her death was the result of a medical emergency that occurred at the school.
Faith, who had Cockayne syndrome, a rare genetic disorder, relied on a feeding tube to receive nutrition and medication. Tragically, her family discovered that the tube had been forcefully dislodged at school last week, but they were not informed right away. Despite the best efforts of doctors and hospital staff, Faith ultimately did not survive.
Virginia family calls for change
What people are saying: Danielle and Bryon Johnson, along with their daughter Makayla, are demanding transparency and reform in the way children with special needs are treated within the education system.
“We still don’t know exactly what happened,” Danielle Johnson said. “They’re still investigating. We only got bits and pieces of the story, and so we’re still waiting for a full investigation.”
Bryon Johnson lovingly described his daughter as a constant source of joy in his life.
“She changed all of us dramatically, brought more gratitude. Humbled us a lot because she was always smiling … just having fun with her sister. Laughing.”
“This situation caused my sister’s life. Just tucking in the tube in her pants caused her life,” Makayla said. “These things are not small. They are very major.”
Faith’s mother expressed her awareness of her daughter’s incurable condition, but she never anticipated that her life would come to an end in this manner.
“She said that this was not the way she was supposed to go.”
The family launched a petition on Change.org, urging the school system to address their concerns, provide answers, and enhance the hiring and training process for staff at special needs schools.
Frederick County Public Schools statement
“We are heartbroken to learn of the passing of one of our students at Northwestern Regional Educational Programs (NREP), and we extend our sincere sympathies to the family during this incredibly difficult time. Frederick County Public Schools is fully cooperating with all pending investigations. Extra support, including counselors, will be available at the school for as long as it is needed.”