ROYAL TRAGEDY
Luxembourg’s Prince Frederik dies aged 22 after battle with rare genetic condition as family release moving statement
His heartbroken parents revealed the moment their son called them into his room to say goodbye
PRINCE Frederik of Luxembourg has died at the age of 22 after a long battle with a rare genetic condition.
His death was announced by his heartbroken father Prince Robert, the first cousin of Grand Duke Henri of Luxembourg who abdicated last year.
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Frederik of Nassau died on March 1 in Paris, an emotional statement on the POLG Foundation's official website said.
Prince Robert, 69, and his wife, Princess Julie of Nassau, detailed how their beloved son who was born with POLG Mitochondrial disease died surrounded by his loving family.
The read: "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.
"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.
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"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."
"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," Prince Robert added.
"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."
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Frederik was born with the condition but it was not diagnosed until he was 14-years-old after his symptoms became more noticeable.
POLG disease takes energy from the cells in the body and causes multiple organ failure.
After his diagnosis, the young royal became an advocate for people with the disorder, setting up the POLG Foundation to raise awareness and promote research.
In Frederik's final days, his father revealed that he had largely lost the ability to talk.
But, with his dying breaths, he was able to ask his father a final question before saying goodbye.
"Frederik’s last question to me, prior to his other remarks was: 'Papa, are you proud of me?'" Prince Robert said.
What is POLG Mitochondrial disease?
POLG disease is a genetic mitochondrial disorder that robs the body’s cells of energy.
It causes progressive multiple organ (brain, nerves, liver, intestines, muscles, swallowing and ocular function, etc.) dysfunction and failure.
One might compare it to having a faulty battery that never fully recharges and is in a constant state of depletion.
POLG impacts 300 million people across the world and is difficult to diagnose when children are born.
Sufferers are only usually diagnosed when symptoms become more acute.
The symptoms, which can be mild to severe, most often include ophthalmoplegia (paralysis of eye muscles), muscle weakness, epilepsy and liver failure.
There is no cure and no treatments currently available for the genetic condition.
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"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 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."
'MY SUPERHERO'
Frederik's health had declined in recent weeks after he was hospitalised with pneumonia and had suffered another severe infection leaving him unable to move.
Prince Robert called his son "my Superhero" and praised his dedication to finding a cure for POLG and his ability to inspire those around him.
"Frederik is the strongest person that we know," the family would repeatedly say about the young royal.
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Despite his condition, he had a "lust for life" that helped him overcome the physical and mental challenges and surround himself with a wealth of friends.
Even during his final hours, Frederik has his alarm set for an Italian lesson on Duolingo, his father fondly recalled.
As the family admit that "everything feels a little colder and darker in his absence," Frederik's personal reminders are serving as instructions to help them through their grief.
"Go outside when the sun is shining," Frederik wrote in the notes page on his phone, and this is what his family intend to do.
Princess Charlotte noted to her family that since her brother's death, the sun has continued to shine.
FOND MEMORIES
Underneath the moving announcement of his death, the family shared some of their favourite pictures of Frederik.
They include touching black and white photos of himself with his siblings and beloved dog Mushu.
Other family photos documented happy and fond memories of his life.
Frederik enjoying music, film, nature, fossils, and gastronomy.
He was born in Aix-en-Provence in southern France and spent the first years of his life in London.
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From two years old he then moved to Geneva, Switzerland, where he later went to the International School.
The prince then went to the Ecole Eden Primary School and St George's School in Clarens next to Montreux.
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