In June 2022, 12-year-old Trey’s life took a harrowing turn. While visiting Denver on summer break, Trey experienced constant vomiting, rapid weight loss, and a baffling decline in his health. Over six weeks, he lost more than 30% of his body weight, leaving doctors puzzled and deeply concerned.
Admitted to Children’s Hospital Colorado, Trey’s condition quickly escalated from bad to critical. A detailed MRI of Trey’s brain and spinal cord and test of his spinal fluid produced alarming findings: Trey had lesions on his brainstem and received a diagnosis of neuromyelitis optica (NMO). NMO is a rare and severe autoimmune disease in which the immune system attacks the optical nerves, brainstem, and spinal cord.
Trey was unable to swallow, speak, or protect his airways due to severe vocal cord paralysis and a lack of control of functions below his neck due to near complete paresis, a form of severe muscle weakness. He required serious medical interventions, including a tracheostomy for breathing support, a gastrojejunostomy (GJ) tube for feeding assistance and an urgent transfer to the Pediatric Intensive Care Unit (PICU), where he would spend a month. In the PICU, doctors began critical, life-saving treatment. He also started receiving a groundbreaking immunotherapy, called eculizumab, to prevent future NMO attack relapses. Although this treatment had not yet been approved for pediatric use, it received emergency FDA approval for compassionate use for Trey, who would become the first child with NMO to be treated with this therapy. This decision proved pivotal; Trey has continued to receive the treatment biweekly, allowing him to be free of relapse.
Today, Trey's life is a testament to the resilience of the human spirit and the unwavering dedication of Children’s Colorado. Now 15, he is engaging in sports and academics again. His remarkable recovery, from a boy on the brink to a vibrant, active teenager, stands as a beacon of hope, highlighting the hospital's exceptional care and the miraculous possibilities within the realm of modern medicine.