Rare genetic disorder claims life of Luxembourg’s Prince Frederik at 22

Prince Frederik, the youngest son of Prince Robert of Luxembourg and Princess Julie of Nassau, has died aged 22 from POLG mitochondrial disease after campaigning for research and a cure for it.

Prince Frederik with his father, Prince Robert of Luxembourg. ’His humour, and his boundless compassion, compelled him to leave us with one last laugh, to cheer us all up.’ Picture: POLG Foundation

Prince Frederik, the youngest son of Prince Robert of Luxembourg and Princess Julie of Nassau, has died at the age of 22 from POLG mitochondrial disease, a rare genetic disorder.

Prince Robert, the first cousin of Grand Duke Henri of Luxembourg, has shared the news on the website of the POLG Foundation, an organisation Prince Frederik founded to promote research and find a cure for the disease.

“It is with a very heavy heart that my wife and I would like to inform you of the passing of our son,” Prince Robert, 56, wrote in an emotional statement. The young prince died on March 1.

He also shared that Prince Frederik, sensing his time was short, called family members into his room “to speak to him one last time” on February 28, the day before his death, which was also happened to be “Rare Disease Day”.

Said ‘goodbye’ to each family member

Prince Robert said that his son “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,” Prince Robert added, referring to his wife Princess Julie, 58.

Prince Frederik’s farewell messages were “kind, wise, and instructive”, Prince Robert continued, noting that his son left the family with “one last longstanding family joke’’.

“Even in his last moments, his humour, and his boundless compassion, compelled him to leave us with one last laugh, to cheer us all up,” the father reflected.

Prince Frederik, left, with his mother Princess Julie and brother Prince Alexander. Picture: Instagram

‘Papa, are you proud of me?’

Prince Robert also shared that his son asked him a final question: “Papa, are you proud of me?” Prince Frederik had struggled to speak for “several days” before he died, according to Prince Robert, “so the clarity of these words was as surprising as the weight of the moment was profound.”

“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,” Prince Robert explained.

“Frederik knows that he is my superhero, as he is to all of our family, and to so very many good friends,” his father continued. He described his son as a person who was “born with a special capacity for positivity, joy, and determination.”

When Prince Frederik was “little”, his father remembered, he would often say, “if there is one child of ours that I would never need to worry about, it was him.”

‘Emotional intelligence and compassion ... off the charts’

“He has social skills like no other, an amazing sense of humour, an emotional intelligence and compassion that were off the charts, a sense of justice, fairness and decency that knows no bounds,” he added. “He was disciplined and organised beyond belief.”

The royal also noted that Prince Frederik was known for being “particularly headstrong“, admitting that “at times, I might have used the word stubborn’’.

Prince Frederik with a family pet. Picture: POLG Foundation

Prince Frederik, lower centre, with his family. Picture: Instagram

“As his siblings and most anyone who ever met him say, ‘Frederik is the strongest person that we know!’ ” his father said. “Frederik fought his disease valiantly until the very end. His indomitable lust for life propelled him through the hardest of physical and mental challenges.”

Born with POLG mitochondrial disease, Prince Frederik’s condition wasn’t initially diagnosed. It wasn’t until he was 14 that the disease became more apparent and was formally diagnosed, as the symptoms worsened.

POLG mitochondrial disease leads to organ failure

POLG mitochondrial disease, as described by the POLG Foundation, is a genetic mitochondrial disorder that affects the body’s cells, causing them to lose energy and leading to the progressive failure of multiple organs, including the brain, nerves, liver, intestines, muscles, and eyes.

Although Prince Robert referred to the disease as a “burden” that his son carried throughout his life, he praised his son for facing his challenges “with humour and grace”. He also expressed immense pride in his work with the POLG Foundation.

Prince Frederik as a child with his family, including siblings Alexander and Charlotte. Picture: Instagram

Father encourages donations to POLG Foundation

In his message, Prince Robert encouraged those reading his memorial to support the foundation by donating or volunteering in memory of his son.

Born in Aix-en-Provence, France, Prince Frederik spent the first two years of his life in London before his family moved to Geneva, Switzerland in 2004 and later to Vevey and Montreux in the west Swiss province of Vaud.

He attended the International School in Geneva, Ecole Eden and St George’s School, in Clarens, Switzerland.

He is survived by his father, his mother Princess Julie of Nassau, his brother, Alexander, his sister, Charlotte, his three cousins, Charly, Louis, and Donall, his brother-in-law, Mansour, and his Aunt Charlotte and Uncle Mark.

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