Heartbroken family demands change at special needs school after their daughter, 4, dies when her feeding tube got dislodged
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A grieving family has demanded change at a special needs school in Virginia after their infant daughter died after having her feeding tube dislodged.
The family of four-year-old Faith Johnson has demanded accountability from Frederick Public Schools, which operates Northwestern Regional Education Programs, and accused the institution of “severe negligence.”
Faith had Cockayne Syndrome – a rare, inherited genetic disorder characterized by premature aging and neurological abnormalities – and required specialized medical care including a GJ feeding tube.
She died on February 22, following an incident on February 18.
Her family claims that despite numerous specialized meetings and clear instructions given to staff members, her tube was forcibly pulled out at the school. They say that they were not immediately informed of the incident after it had occurred.
“We still don’t know exactly what happened,” her mother, Danielle Johnson, told Fox5. “They’re still investigating. We only got bits and pieces of the story, and so we’re still waiting for a full investigation.”
Her father, Bryon Johnson, described his daughter as a source of joy. “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,” he told the outlet.
An online petition page, set up by the Frederick County community, states that the “act of negligence, combined with a subsequent lack of immediate response, accountability, and proper medical attention, directly resulted in her death.
“This devastating loss reveals a systemic failure within Frederick Public Schools to protect vulnerable students.”
The family’s petition also demands the “immediate termination and removal from all contact with children” of all staff members directly involved in the incident and any subsequent failures in Faith’s care as well as a thorough and independent investigation into the circumstances surrounding the four-year-old’s death.
They have also demanded full transparency, including all video footage related to the incident, grief support and a comprehensive review and reform of school policies and procedures regarding the care of students with medical needs.
“We, the community of Frederick County, will not tolerate the loss of another child due to negligence. We demand safe schools for all children and justice for Faith,” the petition states.
The Independent has contacted Frederick County Public Schools for comment on the incident.
“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,” FPS said in a statement shared with Fox5.
“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.”
