In praise of ... Augusto and Michaela Odone

A kind of life came to an end last week, when Lorenzo Odone died the day after he turned 30. It was a peculiar life because, since childhood, Lorenzo had been ravaged by adrenoleukodystrophy, a genetic disorder which stripped him of hearing, sight and movement, and left him confined to bed. But it was a life nonetheless, and it lasted as long as it did only because of the extraordinary way his parents cherished it. When, as a sparky, trilingual six-year-old, Lorenzo was diagnosed, doctors told Augusto and Michaela Odone their child would not reach age eight. But Augusto refused to accept that nothing could be done, and he resolved to change the science. He lacked any qualification to do so, and yet remarkably he succeeded. By ploughing through the journals, he made himself an expert and was soon convening meetings of specialists from around the world. Thanks to his drive, the plodding pace of research was stepped up to a march, and within three years he had patented Lorenzo's oil. A Hollywood film of the same name presented it as a miracle cure; the truth is that it did, miraculously, prevent others from becoming sick, but it could not reverse the damage already done to victims such as Lorenzo. What allowed him to cheat death for so long was not medicine. Michaela, who died in 2000, reordered the family's existence around his care. Their sacrifices kept him safe, and his expression responded to the attention he received. The last 22 years of Lorenzo's life are proof of the power of love.

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