4-Year-Old Faith Johnson Dies After Feeding Tube Dislodged at Virginia School

A devastating incident at Northwestern Regional Education Programs (NREP) has left a Virginia family grieving the loss of their four-year-old daughter, Faith Johnson. The young girl, who had Cockayne syndrome, a rare genetic disorder, passed away after complications from a dislodged GJ feeding tube—an essential medical device used for her nutrition and medication.

On February 18, 2025, while attending NREP, Faith’s gastrostomy-jejunostomy (GJ) feeding tube was removed during routine care. According to an incident report shared by her father, Bryon Johnson, it occurred when a staff member attempted to lift Faith from her stroller for a diaper change. The staff member reportedly struggled with tangled stroller straps, leading to the removal of the feeding tube from Faith’s stomach.

A nurse on-site immediately realized the severity of the situation, reportedly saying, “Oh my gosh, the tube is out, the whole tube is out,” before calling Faith’s mother and emergency services.

Faith’s parents, Danielle and Bryon Johnson, are devastated and are now advocating for transparency and justice. They claim that despite giving explicit instructions to NREP staff about securing Faith’s feeding tube under her clothing to prevent dislodgment, those safety measures were not consistently followed.

“She was not supposed to go this way,” Danielle Johnson said, expressing frustration over what she believes was an avoidable tragedy.

In response, the family has launched a Change.org petition demanding:

• An independent investigation into the circumstances surrounding Faith’s death
• The immediate termination of staff members involved
• A review and reform of school policies regarding medically fragile students

The petition states that “negligence, lack of immediate response, and improper medical attention directly resulted in Faith’s death.”

Frederick County Public Schools, which oversees NREP, has issued a statement expressing condolences:

“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.”

The school district has pledged full cooperation with ongoing investigations and has made counseling services available to students and staff affected by the incident.

Both Child Protective Services and the local sheriff’s department are actively investigating the case to determine if negligence played a role in Faith’s death.

The Johnson family continues to push for answers and systemic reforms to prevent similar incidents in the future.