Father who was determined not to let his gravely ill son die, and inspired the film Lorenzo's Oil

The tale of the determined amateur who proves the professionals wrong is always a compelling one, but with Augusto Odone – who has died aged 80 – it went much deeper. In 1984, his youngest child, Lorenzo, just a month away from his sixth birthday, was diagnosed with adrenoleukodystrophy (Ald), a neurological disorder that causes the degeneration of the brain in young boys. "We were told to go home and watch Lorenzo die," Odone recalled. Neither he nor his wife, Michaela, was prepared to do that.

And so Augusto, an economist based at the World Bank in Washington DC, who had no scientific training, spent the time that he was not caring for his boy in the library of the George Washington University near his home, trying to understand Ald. It was, he read, linked to...