People have been used to thinking of them as “Daniel and Simen” or “Simen and Daniel”, the two gaming and humor-loving boys from Bamble in Telemark who have run a YouTube channel since primary school age, and who eventually secured them tens of thousands of followers – and a prize.
One August day in 2022, Daniel fell asleep peacefully at Skien Hospital.
A common denominator for the brothers was the rare and serious disease called Duchenne muscular dystrophy: an error in the muscle cells causes muscle function to become weaker. Almost only boys are affected, and over the years they will struggle with running, jumping and climbing stairs – among other things.
This meant that Simen and Daniel became dependent on wheelchairs already as children.
Fatal pneumonia
In July, Daniel got to do something he had been looking forward to: Going to the Stavern Festival.
AT THE FESTIVAL: One month before Daniel died, he was at the Stavern Festival. This was the highlight for him this summer. Photo: Private
But a month later he was admitted to hospital with pneumonia. Duchenne’s causes the body to cope very poorly with colds and viral diseases.
Father Bjørn Gunnar says that they were about to lose Daniel in the winter of 2021, and that the 18-year-old tried to “hold on”.
– You never manage to prepare completely, even when you know that the end station is approaching. Eventually we could no longer promise Daniel that he could come home to Simen, because he might be too ill to stay at home.
On August 19, Daniel fell asleep.
Simen is open that Duchenne has led to changes in his body and agility for him too:
– I can feel that the body is changing. I get tired more quickly and the mobility in my arms has deteriorated. That’s how Duchenne is, you get worse and worse.
However, good blood circulation and exercise movement can calm some of the pain.
– Overwhelming response
Throughout their many years of success on YouTube, the brothers have had to endure ugly and inflammatory comments about their disability, but also a lot of praise for their openness about living with a serious illness.
– I almost only got a good response to the video that Daniel was dead. It was a bit overwhelming. It poured in with messages on Instagram, Snapchat and TikTok.
The 20-year-old admits that he was “quite surprised” by how many people left comments and messages.
– Many people write about Daniel and what he has meant to them.
“Thank you for being a part of my childhood,” writes one.
“Daniel will be remembered as a very nice person.”
“Rest in peace, thank you for a good childhood and for the joy you have spread.”
“You will be missed as a role model for your strong initiative and opinions about bullying.”
“It has been good years. Thanks for the childhood, Daniel!”.
Dad Bjørn Gunnar Andersen (52) has understood after Daniel’s death that his son was in contact with – and helped – many people online.
– Daniel must have had a lot of contact with people. Among other things, he has called people who have not been doing so well and who needed to talk. I could get annoyed with him if he was on the phone a lot, I’ve thought about that in retrospect, says Bjørn Gunnar.
– Several people write that it feels empty and strange not to be able to call Daniel anymore.
STANDING UP FOR OTHERS: Daniel regularly called those who needed someone to talk to. Here with dad Bjørn Gunnar and Simen. Photo: Private
Continuing to create content
The YouTube channel “Daniel Simen”, with 62,000 followers, has been something the brothers have been doing together. But Simen is determined to continue with the hobby:
– I have a plan to continue creating content as long as I can. Preferably more music-related, says the telemarker, who has made a few songs, and has more in stock.
The sons’ challenges have also taken their toll on dad Bjørn Gunnar Andersen (52): At the end of November, around the time Daniel would have turned 19, Bjørn Gunnar suffered a heart attack and is now disabled.
– It was a wake-up call that it costs a lot to be a relative in such a situation. They have been a kind of 20-year long trauma. A state of emergency. We have known heavy things, and I am keen to be a voice for families who live like that. You can become completely drained and empty, says the 52-year-old.
An important development in the Andersen family’s life is that Simen has now got his own apartment, which will be arranged for his needs. Bjørn Gunnar and his wife Ida live a short drive away.
– It is very, very delicious. I’m enjoying myself. And I can decorate as I want, I like things to look good around me.
– Well, you’re quite tidy, but it bears a bit of a “bachelor’s nest” feel now, I think, dad Bjørn Gunnar chimes in.
– Maybe a little, replies Simen.
Burning for inclusion
The plan going forward is to continue the work that the brothers and dad have been passionate about for several years: To create a fixed, annual “inclusion day” that will prevent differences, ethnicity, orientation, disabilities and other factors contributing to exclusion and bullying.
The aim is to visit schools and give lectures. In that way, they can also work for values that were important to Daniel.
– I’m used to doing everything together with Daniel. Now I have to get used to doing things without him. I’ve been in a bit of a shock phase. Now that I have realized that he is no longer here, the longing comes. It is strange and very heavy.
– What do you hope people will think of when they think of Daniel?
– That they remember him for his personality, and how kind he was, says Simen.
– A very kind boy, but also incredibly inclusive and committed, says dad Bjørn Gunnar.
