Norwegian YouTuber Simen Andersen dies at 24, leaving father who lost both sons to rare disease

A 56-year-old Norwegian father will bury his second son this week after both were claimed by the same rare genetic disorder. Bjørn Gunnar Andersen told Dagbladet he is “completely alone” following the death of YouTuber Simen Andersen (24) on April 14—four years after losing his younger son Daniel (18) to Duchennes muscular dystrophy.

“I’m 56 years old and I’ve lost both my boys,” Andersen said ahead of Thursday’s funeral at Langesund Church. “I just have to face the emptiness that’s coming. I can’t promise I’ll get back up quickly—it’s not that simple.”

Simen, who gained national recognition alongside his brother through their YouTube channel, lived with the progressive muscle-wasting disease his entire life. The same condition took Daniel in 2020 at age 18. Both brothers were confined to wheelchairs and relied on ventilators in their final years.

Andersen described Simen as “incredibly generous,” particularly toward Daniel, whom he cared for as the disease advanced. “He was always considerate of his brother. He was the world’s best big brother,” the father said.

A passionate Liverpool FC supporter, Simen co-administered the 40,000-member Facebook group Liverpoolhjerter and held season tickets to local club Wrightegaarden. He also loved music, attending festivals and concerts in Oslo. “He thrived on the energy of live events and the camaraderie of football,” Andersen recalled.

From YouTube fame to advocacy

The Andersen brothers rose to prominence in 2014 with their YouTube channel, which tackled cyberbullying—a cause close to their lives. In 2017, they won Norway’s Gullsnutten award for “Influencer of the Year,” and their 2019 NRK documentary Daniel and Simen brought wider attention to Duchennes muscular dystrophy.

“That documentary is what I’m most proud of,” Andersen said. “It showed both the reality of parenting children with special needs and the serious issue of social exclusion—with humor to break down prejudices.”

The response was overwhelming, with parents thanking the family for giving voice to their struggles. “Many said it helped them talk to their own children and healthcare providers,” Andersen noted.

A “brutal” disease with no cure

Duchennes muscular dystrophy, caused by a mutation in the DMD gene, primarily affects boys, leading to muscle degeneration, loss of mobility, and eventual heart or respiratory failure. While life expectancy has improved to 30–40 years with modern care, Andersen called the disease’s progression “frighteningly brutal.”

“The boys glimpse what life could be, then it’s slowly taken from them,” he said. “As a parent, watching your child lose their abilities—it’s unbearable.”

Simen’s funeral will be held at Langesund Church, followed by burial at Eik Cemetery.