I met Patrick Aubourg 30 years ago and, although we did not always see eye to eye, I was certain that here was a genius who one day would find the key to the riddle of ALD. It is premature to speak of a cure, but Aubourg’s breakthrough with gene therapy proves that, even in the most dread conditions, giving up hope is not just wrong but foolish.

ALD is certainly one of the most debilitating of diseases, as I know first hand. My son Lorenzo, a bright and lively six-year-old, was reduced, in the space of a summer, to a shadow of himself, bedridden and robbed of most of his vital functions.

Yet his mother and I refused to accept the prognosis that condemned Lorenzo to die within two years. Neither of us was a scientist but we shared the conviction that every medical condition, when studied intelligently and with determination, could be resolved. In the face of much scepticism and even hostility, we decided to study ALD ourselves.

Lorenzo’s Oil, the result of our research, did not reverse our son’s condition but it did give him 20 extra years of life. Lorenzo started the therapy we named after him once he was already symptomatic. For boys who begin the therapy before they manifest any of the ALD symptoms, Lorenzo’s Oil prevents, in most cases, the onslaught of the disease.

Lorenzo, the boy who was supposed to live only until his eighth birthday, lived until last year, just after he turned 30. Who knows, had he survived until today, whether Aubourg’s gene therapy could have cured him, allowing him to lead a young man’s full life?

Lorenzo’s Oil was not a medical miracle; Aubourg’s breakthrough needs to be replicated in another laboratory in order to gain the scientific seal of approval. But both achievements challenge conventional wisdom.

Our culture prizes health and quality of life; too often this leads us to write off anyone who enjoys neither. This is not only selfish, it is short sighted. Science proves again and again that the impossible is just around the corner.

Augusto Odone and his late wife, Michaela, became famous for their efforts to find a treatment for their son’s illness, which are recounted in the film Lorenzo’s Oil.

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