Local family holds onto hope as 21-year-old battles rare brain disease

St. Albert musician fights rare brain disease.

A 21-year-old St. Albert musician is facing a long road to recovery after a rare autoimmune disease suddenly left him hospitalized and unable to communicate.

For weeks, Jennifer Fehr thought her son was simply tired.

Tristan Fehr was healthy and active. He worked full time, played drums and guitar, wrote music with his band Rivera, and worked toward his private pilot’s licence.

Then subtle changes began.

“He couldn’t sleep,” Jennifer said. “He was losing weight. Things around him seemed fuzzy, and people appeared to be moving faster than usual.”

At first, his family thought he was exhausted. Then Tristan told his mother something that made her realize something was seriously wrong.

“Something’s wrong with me,” he told her. “Something’s not right. Something’s off.”

Within days, Tristan was in hospital in Kelowna, where he had been vacationing with his family. He had begun experiencing seizures, hallucinations and severe confusion. His first seizure lasted about 45 seconds. Later, his family watched as he had a much more serious seizure, his arms flailing and his body becoming rigid.

“His lips turned blue,” Jennifer said. “It was a horrible, horrible thing to witness.”

Doctors began testing for infections and other possible causes, including meningitis and viruses. An MRI and blood work were clear, but his spinal fluid showed increasing signs of inflammation.

Eventually, doctors suspected anti-NMDA receptor encephalitis, a rare autoimmune disease in which the immune system attacks receptors in the brain. The diagnosis helped explain the dramatic changes in Tristan’s behaviour.

“His girlfriend told me, before he stopped talking, he was saying things to her on the phone, like, he thought we were holding him hostage,” she said. “That’s what was going through his mind, because his brain was so altered from the encephalitis and the inflammation that he couldn’t tell what was right, what was wrong. He wanted to escape, and he was so scared.”

Tristan eventually lost his ability to speak and make eye contact. His movements became repetitive and purposeless, and he struggled to sleep. Doctors began treating him with steroids and other medical treatments, followed by medications.

He is now intubated and heavily sedated at the University of Alberta Hospital. Doctors have told the family recovery can take weeks or months, and Tristan may have to relearn basic movements, including walking.

“It’s not going to be a sprint, it’s going to be a marathon,” Jennifer said. “But we’ve been literally blown away by how incredibly amazing these people are. The nurses, the doctors, how much they care and how much they do for a complete stranger, we’re so grateful.”

Before the illness, Tristan’s life revolved around the things he loved most: music, flying and performing.

His band Rivera won St. Albert’s Amplify Battle of the Bands in 2022 and later returned as a headliner. The group was also featured on an Amplify anniversary album.

Kathleen Bell, the City of St. Albert’s community cultural coordinator, remembers the young musicians as particularly professional and passionate.

“They just shine up onstage,” Bell said. “They were incredibly professional. Especially Tristan.”

For Tristan, one band has always stood above the rest: the Foo Fighters.

His family has tickets to see the band on Sept. 17, a concert Tristan had been eagerly anticipating. He wanted to be as close to the stage as possible, and his dream was to get up there and play drums with the band.

He had already taken an extraordinary step toward that dream. About a year ago, Tristan reached out to producer and engineer Chris Sheldon, whose credits include the Foo Fighters’ album The Colour and the Shape. Tristan asked Sheldon to listen to one of Rivera’s songs.

He did. Sheldon agreed to produce the song “Waste of Fire” and encouraged the band to keep pursuing its music. Tristan plays drums on the track.

Now, instead of preparing for the concert, Tristan is fighting his way back from a disease his family had never heard of before.

“Every day I come to the hospital, I’m just trying to hold on to a thread of hope that something is going to change, and he’s going to open his eyes, or he’s going to talk to us,” Jennifer said. 

While Tristan lies sedated in hospital, his family is trying to keep one part of him close. Jennifer keeps a speaker playing in his room, with a playlist that includes songs he wrote himself as well as music from his favourite artists.

“I just want him to have some peace and help him remember who he is,” she said. “He’s not just my son; he’s one of my best friends in the whole world, and his story isn’t over; this is just a plot twist.” 

A GoFundMe has been established to support Tristan and his family during his recovery. Information about the fundraiser is available at gofundme.com/f/support-for-tristan-his-family.