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10 March 2025

Prince Frederik Of Luxembourg Dies At 22 From Rare Disease

His legacy of advocacy for POLG mitochondrial disease will inspire many.

Prince Frederik of Luxembourg, the youngest son of Prince Robert and Princess Julie of Nassau, died on March 1, 2025, at the tender age of 22 after battling POLG mitochondrial disease. His family confirmed the heartbreaking news on the website of the POLG Foundation, which Frederik himself founded to promote awareness and research about this rare genetic disorder.

"It is with a very heavy heart..." stated Prince Robert of Luxembourg, describing the emotional toll of losing his son. This poignant message highlights the family’s grief, as they gathered together to say their final goodbyes to Frederik on February 28, 2025—just one day after Rare Disease Day.

Frederik had been fighting POLG mitochondrial disease since his diagnosis at age 14. This rare condition occurs due to mutations of the POLG gene, which play a pivotal role in the body's energy production. When the body fails to create sufficient energy, it can lead to multiple organ failure, which is precisely what Frederik faced. His health had recently declined significantly after being hospitalized with pneumonia and other serious infections.

Even during his last days, Frederik managed to showcase the humor and grace he was known for. His father shared, "Frederik found the strength and the courage to say goodbye to each of us... Even in his last moments, his humor and boundless compassion compelled him to leave us with one last laugh to cheer us all up.” This touching remark reflects Frederik's spirit and the way his family will always cherish his memory.

The POLG Foundation, established by Frederik in 2022, aims to shine light on the challenges of living with POLG disease and to advocate for those suffering from similar conditions. Prince Robert praised his son's commitment to this cause, stating, "Frederik and the POLG Foundation... are committed to finding therapies and a cure to save other patients from suffering what Frederik and our family have endured." This reflects Frederik’s desire to convert his struggles and hardships to fuel awareness and help future generations.

On the day before he passed, Frederik requested his family come to his room, one last chance to connect and reflect before saying goodbye. "Papa, are you proud of me?" he asked, his words carrying significant weight. Although he had not been able to speak much for days, the clarity of this question took everyone by surprise. His father had many times assured him of his pride, but this moment was special. “The answer was very easy,” Prince Robert remarked, wishing to provide reassurance to his son who felt deeply about his contributions to the world.

Although born with this debilitating condition, Frederik took pride in his unique position. “I am glad to be the one born with this disease,” he reportedly said to a close friend. He understood the life-threatening nature of his illness, yet maintained hope. “Even if my parents do not have the time to save me, I know they will be able to save other children.” This perspective is just another reflection of his strength and extraordinary outlook on life.

POLG mitochondrial disease is estimated to affect roughly 1 in 5,000 individuals globally, making it one of the most common serious genetic disorders. Symptoms can be varied, from muscle weakness and seizures to severe organ dysfunction, contributing to the complex nature of the disease which continues to confound medical professionals.

Frederik's legacy will extend beyond his life. His commitment to advocacy, emphasized by his father, encapsulates the essence of his mission: “These diseases are usually hard to recognize even by physicians.” The goal set forth by Frederik and the foundation is not only to aid others currently suffering but also to instill hope for future advancements.

His story serves as both inspiration and solemn reminder to many families grappling with rare diseases. Prince Robert encapsulated this sentiment perfectly when he concluded, “One light was extinguished, but so many remain.” The fight for answers and treatment against POLG disease continues, fueled by Frederik's indomitable spirit and his family's efforts.

Though Prince Frederik's time was brief, his impact on spreading awareness about POLG mitochondrial disease will undoubtedly leave lasting impressions. His family, friends, and supporters strive to carry forth his mission, continuously reminding others of the resilience and value of compassion even amid life’s most challenging trials.