Prince Frederik of Luxembourg, who passed away on March 1, 2025, at the young age of 22, spent his final years battling a rare genetic disorder known as PolG. A director who collaborated with the prince on a short film has now revealed how difficult it was to witness his struggles in the months leading up to his passing.
A Royal Battle Against a Rare Disease
Prince Frederik, the only son of Prince Robert and Princess Julia of Nassau, was diagnosed with PolG at the age of 14. The condition, caused by mutations in the POLG gene, disrupts the body’s mitochondrial function, leading to progressive organ failure and a significant decline in physical abilities. As the disorder advanced, it became increasingly difficult for him to perform even basic tasks, a reality that was starkly evident in his final days.
A Film to Raise Awareness
Determined to make a difference, Prince Frederik worked closely with director Mei Fa Tan on a short film that was released six months before his passing. Commissioned by his mother, Princess Julia, the film was created to raise awareness about PolG and its devastating impact on individuals and their families.
Speaking about the experience, Tan recalled the heartbreaking moments of filming. “There were times when he couldn’t even get up by himself. It was really painful to watch,” she said. Despite his declining health, Frederik was passionate about the project, using his voice and platform to educate the world about the disease.
Legacy of Advocacy and Philanthropy
Prince Frederik was not only a royal but also a fierce advocate for those battling rare diseases. In 2015, he founded the POLG Foundation, an organization dedicated to funding research and raising awareness about mitochondrial disorders. Over the years, the foundation has contributed over $3.6 million to scientific research aimed at finding a cure for PolG and other mitochondrial diseases.
His advocacy efforts also extended into fashion. Partnering with renowned designer Donna Karan, he launched the MITO clothing line, with proceeds going toward research and support initiatives for individuals living with mitochondrial diseases. His commitment to the cause also led him to participate in groundbreaking medical trials, providing valuable data that continues to shape research in the field.
For more information on mitochondrial diseases and ongoing research, visit the National Institute of Neurological Disorders and Stroke (NINDS) at www.ninds.nih.gov.
A Father’s Tribute
Prince Robert of Luxembourg, devastated by the loss of his son, spoke about Frederik’s unwavering spirit. “He was my superhero. He refused to let his condition define him, and instead, he used it as a platform to help others,” he said. The prince’s courage and determination to create change have left an indelible mark, not just in Luxembourg, but worldwide.
Frederik’s efforts to improve the lives of those with rare diseases will continue through the initiatives he championed. His foundation remains active, with plans to expand funding for research and patient support in the coming years. Those interested in supporting his cause can visit the official POLG Foundation website at www.polgfoundation.org.
Reflections on a Life Cut Short
Despite his challenges, Prince Frederik maintained a positive outlook and a sense of humor. In his final film, he reflected on his childhood dreams and how his world changed due to the disease. “When you’re a kid, you have all these dreams, all these aspirations. The possibilities seem endless. But as my condition progressed, my world got smaller and smaller,” he said in the documentary.
His words serve as a reminder of the struggles faced by those with rare genetic disorders. While advances in medical research continue, the need for funding, awareness, and advocacy remains critical.
For details on genetic testing and support for mitochondrial diseases, visit the National Human Genome Research Institute (NHGRI) at www.genome.gov.
Looking Ahead
Prince Frederik’s death has sparked renewed discussions about the need for increased research funding and global awareness of mitochondrial disorders. His foundation, alongside researchers and medical professionals, remains committed to finding a cure and supporting those affected.
As the world remembers the young prince, his legacy of resilience, advocacy, and philanthropy stands as a beacon of hope for those fighting similar battles. His contributions to the field of mitochondrial disease research and his unwavering determination to make a difference will not be forgotten.
For updates on rare disease research and patient support initiatives, visit the World Health Organization (WHO) at www.who.int.
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