Prince Frederik of Luxembourg Speaks About Rare Genetic Condition in Resurfaced Video After Death at 22

Prince Frederik of Luxembourg spoke about his PolG diagnosis and what brought him solace in an emotional video that has resurfaced following his death from the genetic disorder at age 22.

Frederik was diagnosed with PolG mitochondrial disease, which has no known cure, at age 14, and he died on March 1 at age 22. Frederik’s father Prince Robert is a first cousin of Grand Duke Henri of Luxembourg, and the young royal spoke about how PolG changed his life in a video that The PolG Foundation (which he launched in 2021) shared on Instagram following his death.

“When you’re a kid, you have all these dreams, all these aspirations. These things you want to do,” Prince Frederik said in the full feature first posted to YouTube in September 2024. “The possibilities are endless,” he narrated over home videos that showed him running on the beach and playing sports, as the frame flashed to a shot of him asleep in a hospital bed.

“I’m not sure I understood all the consequences of PolG when I first got diagnosed. It’s more subtle, where slowly, the world is getting smaller and smaller,” he said.

The video rolled to commentary from Emilia and Amelie, two siblings and PolG patients whose brother Philip died from the disease who died at age 20 in May 2023. One of the sisters described that while most lives are defined by firsts, “our lives are made of lasts” because of the disorder.

The Cleveland Clinic describes mitochondria as “the powerhouse of the cell,” meaning that a deficit affects organ function. The PolG Foundation specifies that PolG mitochondrial disease is “a genetic mitochondrial disorder that robs the body’s cells of energy,” causing progressive multiple organ dysfunction and failure. The rare condition is thought to affect about 300 million people worldwide, but is difficult to diagnose because of the wide range of symptoms.

The camera panned to several snippets of medical experts explaining more about PolG  and emphasizing the importance of increased research, in frames interspersed with footage of Prince Frederik.

“When I was 19 years old, I started getting into fashion, and I’m just trying to make fun stuff,” he said in audio over visuals of him with merchandise from the MITO clothing line he designed to benefit the foundation’s research. Frederik used a wheelchair as he held court in the middle of the room, laughing and chatting with other young people who checked out his creations.

“I guess this helps me in a way, turning this terrible disease into fun pieces I can share with the world,” he said.

The clip closed with footage of Emilia and Amelie smiling and lying in a field together, then panned to Frederik looking at old home photos and video of him walking on the beach.

Text at the end said that “PolG research will save lives” with a request for donations.

Prince Robert announced the news of Prince Frederik’s death in a statement shared to the PolG Foundation website on March 9, and eulogized his young son with love as “my superhero.” Prince Frederik is survived by his parents, Prince Robert and Princess Julie, and his elder siblings, Princess Charlotte, 29, and Prince Alexander, 27.

“It is with a very heavy heart that my wife and I would like to inform you of the passing of our son, The POLG Foundation Founder and Creative Director, Frederik,” Prince Robert, 56, began.

“Last Friday, February 28th, on ‘Rare Disease Day,’ our beloved son called us in to his room to speak to him for one last time. Frederik found the strength and the courage to say goodbye to each of us in turn – his brother, Alexander; his sister, Charlotte; me; his three cousins, Charly, Louis, and Donall; his brother-in-law, Mansour; and finally, his Aunt Charlotte and Uncle Mark. He had already spoken all that was in his heart to his extraordinary mother, who had not left his side in 15 years,” he said of the tight bond his wife and youngest son shared.

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“After gifting each of us with our farewells – some kind, some wise, some instructive – in true Frederik fashion, he left us collectively with a final long-standing family joke. Even in his last moments, his humor, and his boundless compassion, compelled him to leave us with one last laugh….to cheer us all up.”

The royal said that his son’s last question to him was, “Papa, are you proud of me?” in words that weighed on Robert’s heart.

“He had barely been able to speak for several days, so the clarity of these words was as surprising as the weight of the moment was profound,” he wrote.

“The answer was very easy, and he had heard it oh so many times…. but at this time, he needed reassurance that he had contributed all that he possibly could in his short and beautiful existence and that he could now finally move on.”