L-C graduate fights rare diseases

LUXEMBURG – Trenton DeVos, a 20-year-old graduate from Luxemburg-Casco High School, received a devastating diagnosis in Dec. 2024. After finding himself suddenly weak and unable to urinate, DeVos was admitted to Bellin Hospital, where he underwent multiple tests. His condition quickly worsened, with a fever spiking to a critical 108.3°F. By Dec. 5, DeVos had lost all movement and sensation below his chest. He was airlifted to Froedtert Hospital in Milwaukee, where specialists performed additional tests and discovered
inflammation and lesions on his entire spinal cord extending up to his brainstem. Tests confirmed a diagnosis of myelin oligodendrocyte glycoprotein antibody disease (MOGAD) and transverse myelitis.

“I was completely fine one day, and the next, I couldn’t pee and could barely walk and my battle began,” DeVos said. “The way I understand it, the doctor’s best guess is that I got a sickness that usually anyone could’ve just fought off. However, for some reason, my body overcompensated , which led to the autoimmune condition of MOGD that I will now always live with.”

MOGAD is an autoimmune disorder in which the body’s immune system attacks its own tissues. The immune system destroys the fatty substance called myelin, which coats and protects nerve fibers in the optic nerve, brain and spinal cord. DeVos’ doctors believe MOGAD may have caused transverse myelitis, a rare neurological condition which causes inflammation of the spinal cord, the part of the nervous system that sends messages from the brain to the nerves and also the sensory information back to the brain.

Despite the odds, DeVos’ family said he has shown incredible strength and determination. He has received multiple aggressive treatments including IVIG and plasmapheresis, as well as high-dose steroids and experimental drugs, which he continues to take.

In January, DeVos began intensive rehabilitation at Shirley Ryan AbilityLab in Chicago, followed by day-rehab at Froedtert. He is now undergoing outpatient therapy at Aurora.

Thanks to DeVos’ hard work, motivation and the support of his care team, he is walking again. However, he continues to face significant challenges with balance, coordination, heart rate regulation, bladder/bowel control and no feeling from the chest down. His recovery is ongoing, and he continues to work every day toward regaining full function.

Unfortunately, his family said they will never know why this disease occurred or if DeVos will fully recover. There is no cure and the severe symptoms he has overcome could resurface at any time.

“As a 20-year-old, trying to still live somewhat of a normal life, these difficulties make it quite frustrating, defeating and embarrassing at times,” DeVos said. “However, I still have faith and trust in God and my medical team that I will continue to improve.”

DeVos is an electrician at Vos Electric and remains hopeful to return to his full-time career and continue pursuing his goal of becoming a journeyman.

To help offset the substantial and ongoing medical expenses, his family is organizing a benefit on Sunday, Oct. 5 at the Green Bay Distillery, 835 Mike McCarthy Way, Ashwaubenon. All proceeds will go toward Trenton’s medical bills, therapy, medications and ongoing care.

The event will feature a gun raffle, live music and raffle baskets.

Donations can be made at www.caringbridge.org/site/9b81b451-bb32-11ef-87de-25aba14f9caf?from=%2Fsearch&fname=Trenton or www.gofundme.com/f/aid-trentons-battle-with-transverse-myelitis.