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30 Apr 2025, Wed

Prince Robert mourns loss of son Frederik to rare disease at 22

Mavi Filha de Neymar


Prince Robert of Luxembourg and his wife, Princess Julie of Nassau, faced an unimaginable tragedy with the death of their youngest son, Frederik of Nassau, at the age of 22, on March 1, 2025, in Paris. Frederik, diagnosed at 14 with the rare mitochondrial disease POLG, passed away after an eight-year battle that ended in progressive multi-organ failure. The announcement came through an emotional statement on the POLG Foundation website, an organization Frederik founded to fund research into the condition that afflicted him. Surrounded by family in his final moments, the young prince left a legacy of courage and compassion, bidding farewell to each loved one with personalized words that blended wisdom, affection, and even a touch of humor, including a final family joke that brought bittersweet smiles. His passing, just before Rare Disease Day on February 28, spotlighted the struggles of approximately 300 million people worldwide affected by similar conditions, reigniting calls for advancements in medical research.

The Luxembourg royal family, recently adjusting to Grand Duke Henri’s abdication in October 2025, is now in mourning but resolute in honoring Frederik’s memory. Robert, Henri’s cousin, and Julie described their son as a resilient young man who, despite growing physical limitations, established the POLG Foundation to pursue effective treatments. Frederik’s death, less than three weeks shy of his 23rd birthday on March 18, was marked by a serene and deliberate goodbye, as he called each family member to his hospital room in Paris for a personal farewell, showcasing his inner strength and generous spirit.

While the world watched the transition of the Luxembourg throne to Prince Guillaume, Frederik’s loss cast a shadow over the royal family. Having battled POLG for nearly a decade, the prince not only left an indelible mark on his loved ones but also inspired the scientific community by driving research that could one day benefit millions affected by mitochondrial disorders.

A farewell filled with heartfelt moments

Prince Robert shared that Frederik found the strength to say goodbye to each family member in a unique way. He spoke with his brother Alexander, sister Charlotte, parents, cousins Charly, Louis, and Donall, brother-in-law Mansour, and uncles Charlotte and Mark, offering words ranging from tender affection to thoughtful advice, always laced with his signature humor.

Julie, who stood by her son for 15 years since his earliest symptoms, received his final farewell in a moment Robert called profoundly moving. After individual goodbyes, Frederik gathered everyone for one last family moment, sharing an old inside joke that lightened the heavy atmosphere, reflecting his desire to ease their pain.

The toll of POLG on Frederik’s life

Diagnosed at 14, Frederik battled POLG, a mitochondrial disease that impairs cellular energy production, affecting organs like the brain, nerves, muscles, and liver. Symptoms began subtly in childhood with unusual fatigue, becoming more pronounced in his teenage years, leading to a diagnosis that reshaped his and his family’s future.

The disease’s progression was relentless, but Frederik turned his struggle into purpose by founding the POLG Foundation, an initiative aimed at accelerating research for treatments and a cure. His death in Paris, surrounded by those he cherished, underscored the severity of mitochondrial disorders, which affect millions globally with no cure yet in sight.

A fight against an incurable foe

Frederik of Nassau spent his final eight years confronting the challenges of POLG, a condition that saps cellular energy and leads to the gradual failure of vital organs. Since his diagnosis in 2017 at age 14, he dealt with symptoms like muscle weakness, neurological issues, and the eventual loss of essential functions such as vision and swallowing. Despite these hardships, he channeled his energy into creating the POLG Foundation, now a beacon of hope for patients and researchers worldwide. Robert and Julie walked every step of this journey with him, with Julie devoting herself fully to his care, while Robert became a vocal advocate for the cause, raising awareness among medical professionals and the public.

POLG, impacting an estimated 300 million people globally through various mitochondrial disorders, is notoriously hard to diagnose. Frederik’s case was identified in adolescence, allowing the family to pursue palliative treatments to ease his symptoms, though a cure remained elusive. His death on March 1, 2025, followed a significant decline, but he faced his end with calm resolve, leaving a legacy that transcends Luxembourg’s royal circles.

In his final moments, Frederik posed a question that deeply touched his father: “Papa, are you proud of me?” Robert’s tearful “yes” affirmed the immense pride in a son who, in his short life, contributed so much to his family and the scientific community.

Key moments in Frederik’s life

Frederik’s journey was defined by resilience and purpose, marked by significant milestones:

  • March 18, 2002: Frederik is born as the youngest child of Prince Robert and Princess Julie.
  • 2017: Diagnosed with POLG at 14, beginning his battle with the disease.
  • 2020: Founds the POLG Foundation to fund mitochondrial disease research.
  • February 28, 2025: Gathers family for a farewell on Rare Disease Day.
  • March 1, 2025: Passes away in Paris at 22, surrounded by loved ones.

These events highlight how Frederik turned personal hardship into a collective mission for medical progress.

The enduring impact of the POLG Foundation

After his diagnosis, Frederik launched the POLG Foundation, an organization dedicated to finding effective treatments for mitochondrial diseases. Now led by his family, it has raised substantial funds for research with potential implications beyond POLG, including cancer, neurodegenerative disorders, and premature aging.

Robert emphasized that the foundation’s advancements could benefit millions over time. The 2022 sale of part of his personal wine cellar, in collaboration with Sotheby’s, was a key fundraising effort Frederik followed with enthusiasm before his health worsened, showcasing his commitment to the cause.

A family united in grief

Frederik’s farewell was a testament to family unity. He bid goodbye to each member with tailored messages, offering practical advice to Alexander, heartfelt words to Charlotte, and gratitude to his parents for their unwavering support over the years.

His final family joke, a cherished tradition, was a parting gift to lighten their sorrow. Robert described it as a reflection of Frederik’s humor and compassion, a young man who, even in his last breath, sought to comfort those he loved.

Understanding POLG’s devastating effects

POLG, a mitochondrial disease caused by genetic mutations, disrupts energy production in cells. Key aspects include:

  • Early symptoms: Extreme fatigue, muscle weakness, and motor difficulties.
  • Progression: Organ failure affecting the brain, liver, and muscles, plus vision loss.
  • Prevalence: Around 300 million people worldwide have mitochondrial disorders.
  • Diagnosis: Challenging and often delayed, as with Frederik’s case at 14.

With no cure, treatments focus on symptom relief, but POLG’s severity often leads to outcomes like Frederik’s.

Frederik’s role in raising awareness

Frederik turned his personal battle into a public mission with the POLG Foundation, spotlighting the need for early diagnosis and innovative treatments for rare diseases. His efforts drew attention to a cause that Robert and Julie vow to carry forward in his memory.

His death, just before Rare Disease Day, amplified the urgency of investing in medical research. Frederik’s bravery in facing POLG inspired not only his family but also patients and scientists who see the foundation as a hopeful step toward breakthroughs.

Prince Robert of Luxembourg and his wife, Princess Julie of Nassau, faced an unimaginable tragedy with the death of their youngest son, Frederik of Nassau, at the age of 22, on March 1, 2025, in Paris. Frederik, diagnosed at 14 with the rare mitochondrial disease POLG, passed away after an eight-year battle that ended in progressive multi-organ failure. The announcement came through an emotional statement on the POLG Foundation website, an organization Frederik founded to fund research into the condition that afflicted him. Surrounded by family in his final moments, the young prince left a legacy of courage and compassion, bidding farewell to each loved one with personalized words that blended wisdom, affection, and even a touch of humor, including a final family joke that brought bittersweet smiles. His passing, just before Rare Disease Day on February 28, spotlighted the struggles of approximately 300 million people worldwide affected by similar conditions, reigniting calls for advancements in medical research.

The Luxembourg royal family, recently adjusting to Grand Duke Henri’s abdication in October 2025, is now in mourning but resolute in honoring Frederik’s memory. Robert, Henri’s cousin, and Julie described their son as a resilient young man who, despite growing physical limitations, established the POLG Foundation to pursue effective treatments. Frederik’s death, less than three weeks shy of his 23rd birthday on March 18, was marked by a serene and deliberate goodbye, as he called each family member to his hospital room in Paris for a personal farewell, showcasing his inner strength and generous spirit.

While the world watched the transition of the Luxembourg throne to Prince Guillaume, Frederik’s loss cast a shadow over the royal family. Having battled POLG for nearly a decade, the prince not only left an indelible mark on his loved ones but also inspired the scientific community by driving research that could one day benefit millions affected by mitochondrial disorders.

A farewell filled with heartfelt moments

Prince Robert shared that Frederik found the strength to say goodbye to each family member in a unique way. He spoke with his brother Alexander, sister Charlotte, parents, cousins Charly, Louis, and Donall, brother-in-law Mansour, and uncles Charlotte and Mark, offering words ranging from tender affection to thoughtful advice, always laced with his signature humor.

Julie, who stood by her son for 15 years since his earliest symptoms, received his final farewell in a moment Robert called profoundly moving. After individual goodbyes, Frederik gathered everyone for one last family moment, sharing an old inside joke that lightened the heavy atmosphere, reflecting his desire to ease their pain.

The toll of POLG on Frederik’s life

Diagnosed at 14, Frederik battled POLG, a mitochondrial disease that impairs cellular energy production, affecting organs like the brain, nerves, muscles, and liver. Symptoms began subtly in childhood with unusual fatigue, becoming more pronounced in his teenage years, leading to a diagnosis that reshaped his and his family’s future.

The disease’s progression was relentless, but Frederik turned his struggle into purpose by founding the POLG Foundation, an initiative aimed at accelerating research for treatments and a cure. His death in Paris, surrounded by those he cherished, underscored the severity of mitochondrial disorders, which affect millions globally with no cure yet in sight.

A fight against an incurable foe

Frederik of Nassau spent his final eight years confronting the challenges of POLG, a condition that saps cellular energy and leads to the gradual failure of vital organs. Since his diagnosis in 2017 at age 14, he dealt with symptoms like muscle weakness, neurological issues, and the eventual loss of essential functions such as vision and swallowing. Despite these hardships, he channeled his energy into creating the POLG Foundation, now a beacon of hope for patients and researchers worldwide. Robert and Julie walked every step of this journey with him, with Julie devoting herself fully to his care, while Robert became a vocal advocate for the cause, raising awareness among medical professionals and the public.

POLG, impacting an estimated 300 million people globally through various mitochondrial disorders, is notoriously hard to diagnose. Frederik’s case was identified in adolescence, allowing the family to pursue palliative treatments to ease his symptoms, though a cure remained elusive. His death on March 1, 2025, followed a significant decline, but he faced his end with calm resolve, leaving a legacy that transcends Luxembourg’s royal circles.

In his final moments, Frederik posed a question that deeply touched his father: “Papa, are you proud of me?” Robert’s tearful “yes” affirmed the immense pride in a son who, in his short life, contributed so much to his family and the scientific community.

Key moments in Frederik’s life

Frederik’s journey was defined by resilience and purpose, marked by significant milestones:

  • March 18, 2002: Frederik is born as the youngest child of Prince Robert and Princess Julie.
  • 2017: Diagnosed with POLG at 14, beginning his battle with the disease.
  • 2020: Founds the POLG Foundation to fund mitochondrial disease research.
  • February 28, 2025: Gathers family for a farewell on Rare Disease Day.
  • March 1, 2025: Passes away in Paris at 22, surrounded by loved ones.

These events highlight how Frederik turned personal hardship into a collective mission for medical progress.

The enduring impact of the POLG Foundation

After his diagnosis, Frederik launched the POLG Foundation, an organization dedicated to finding effective treatments for mitochondrial diseases. Now led by his family, it has raised substantial funds for research with potential implications beyond POLG, including cancer, neurodegenerative disorders, and premature aging.

Robert emphasized that the foundation’s advancements could benefit millions over time. The 2022 sale of part of his personal wine cellar, in collaboration with Sotheby’s, was a key fundraising effort Frederik followed with enthusiasm before his health worsened, showcasing his commitment to the cause.

A family united in grief

Frederik’s farewell was a testament to family unity. He bid goodbye to each member with tailored messages, offering practical advice to Alexander, heartfelt words to Charlotte, and gratitude to his parents for their unwavering support over the years.

His final family joke, a cherished tradition, was a parting gift to lighten their sorrow. Robert described it as a reflection of Frederik’s humor and compassion, a young man who, even in his last breath, sought to comfort those he loved.

Understanding POLG’s devastating effects

POLG, a mitochondrial disease caused by genetic mutations, disrupts energy production in cells. Key aspects include:

  • Early symptoms: Extreme fatigue, muscle weakness, and motor difficulties.
  • Progression: Organ failure affecting the brain, liver, and muscles, plus vision loss.
  • Prevalence: Around 300 million people worldwide have mitochondrial disorders.
  • Diagnosis: Challenging and often delayed, as with Frederik’s case at 14.

With no cure, treatments focus on symptom relief, but POLG’s severity often leads to outcomes like Frederik’s.

Frederik’s role in raising awareness

Frederik turned his personal battle into a public mission with the POLG Foundation, spotlighting the need for early diagnosis and innovative treatments for rare diseases. His efforts drew attention to a cause that Robert and Julie vow to carry forward in his memory.

His death, just before Rare Disease Day, amplified the urgency of investing in medical research. Frederik’s bravery in facing POLG inspired not only his family but also patients and scientists who see the foundation as a hopeful step toward breakthroughs.

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