Given that I had first seen Lorenzo’s Oil nearly 16 years ago, this bit of news came as quite a shock to me: Lorenzo Odone, the real-life person the movie was based on, died this past Friday at the age of 30. He lived over 20 years longer than the doctors had originally predicted.

The 1992 movie, starring Susan Sarandon and Nick Nolte, told the story of Augusto and Michaela Odone - the parents of Lorenzo. After their child is diagnosed with ALD (a supposedly incurable nerve disorder), the two do their own research and eventually become authorities on the topic. They later helped to create ‘Lorenzo’s Oil’, a kind of olive oil that helped stop the progression of their son’s disease.

Although he never returned to normal, we saw a mostly paralyzed Lorenzo learning to communicate with his eyes by the end of the film. While there is still some dispute in the medical community, it’s believed the Odones’ discovery can help prevent the onset of the symptoms for those genetically at risk.

Ironically, thanks to his parents’ work, Lorenzo even managed to outlive his own mother; Michaela passed away from lung cancer in 2002. His death, which came one day after his birthday, was a result of aspiration pneumonia.