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July 9, 2010 / Magic Mama

Lorenzo

Have you seen the movie Lorenzo’s Oil? It’s a 1992 drama, starring Nick Nolte and Susan Sarandon, based on the true story of Lorenzo Odone’s family.

I haven’t watched it (because that just seems too hard). But I’m bringing it up now because sometimes when people ask about ALD, I mention the movie and then they know exactly what I’m talking about.

Plot summary: Until about the age of 7, Lorenzo was a normal child. After then, strange things began to happen to him: he would have blackouts, memory lapses and other strange mental phenomenons. He is eventually diagnosed as suffering from ALD: an extremely rare incurable degenerative brain disorder. Frustrated at the failings of doctors and medicine in this area, the Odones begin to educate themselves in the hope of discovering something which can halt the progress of the disease.

The real Lorenzo died in May of 2008, one day after his 30th birthday. He lived more than 20 years longer than doctors had predicted (which was less than 2 years from diagnosis) and is the oldest survivor of ALD. His parents Augusto and Michaela were an incredible inspiration.

A poem that Michaela wrote, inspired by Lorenzo’s love of their time in Africa, was set to music by Phil Collins and featured on his 1996 album Dance into the Light.

“Suddenly for me the world turned upside down
far from my friends the lions and the dolphins came this awful sound
Dark shadows, sounds of thunder raging over me
came this monster called Adrenoleukodystrophy”

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