Lyles, 95, longtime producer at the Paramount studio. He left The Times in All Sections. About Us. B2B Publishing. Business Visionaries. Hot Property. Develop and improve products. List of Partners vendors. By the time he reached school age, he began to show symptoms of problems with his nervous system.
At age 6, in , he was diagnosed with the childhood cerebral form of adrenoleukodystrophy ALD , a progressive degenerative myelin disorder, meaning that myelin, the "insulation" around nerves, breaks down over time. In Lorenzo's case, the nerves in the brain were gradually being destroyed. In the cerebral form of ALD, symptoms typically begin to appear in mid-childhood four to eight years old ; the rate of progression is variable, but the disease leads to death within one to 10 years.
Michaela and Augusto, devastated by Lorenzo's diagnosis, decided to research ALD even though neither had a scientific or medical background. They eventually learned that ALD leaves the body unable to break down big fat molecules, either molecules the body makes itself or ones that enter the body through food. After much hard work, they helped develop an oil made from olive and rapeseed, which they named " Lorenzo's Oil.
Unfortunately, Lorenzo became bedridden and unable to communicate by the time he was 7 years old. Nurses and his parents cared for him 24 hours a day. He was treated with Lorenzo's Oil even though his disease had already progressed. He far outlived his prognosis, surviving to age He died on May 30, , one day after his 30th birthday. Both his father Augusto and his life-long friend Oumouri Hassane were at his side when he passed away.
The tale of two parents who, motivated by love of their son, discovered a therapy that had eluded the medical establishment was soon taken up by the media. In America, my father and stepmother were interviewed on TV and made the cover of People magazine; in his native Italy, my father became a national hero. To this day, I cannot show my credit card to an Italian shopkeeper without being besieged with questions about Lorenzo and praise for my father's heroic struggle.
Phil Collins wrote a song, Lorenzo, to lyrics by my stepmother. Even Hollywood came calling: George Miller, the director who went on to make Happy Feet, convinced my father and stepmother that Lorenzo's story deserved a global audience, to inspire other parents with children in similar conditions.
During the making of the film, Lorenzo's Oil, Nick Nolte shadowed my father from home to office. In particular, he told us, he wanted to capture my father's Italian accent. The result had my father huffing crossly that Nolte made him sound like an ice cream vendor in New York's Little Italy. Meanwhile, Susan Sarandon, herself a devoted mother, punctiliously studied Michaela, becoming her friend in the process. The film came out in My father and Michaela were satisfied with the accuracy of its portrayal.
Doctors begged to differ. Studies conducted with Lorenzo's Oil were inconclusive, they claimed, and the Odones were peddling false hopes. Undaunted, my father and Michaela founded a charity, the Myelin Project, to promote their vision of medical research: it should be conducted not by scientists locked up in labs competing with one another for a breakthrough, but by scientists in collaboration with one another - and with the families of the afflicted.
This was revolutionary: at annual conferences held by the Myelin Project, researchers would meet parents whose sense of urgency was greater than any hope of a Nobel prize.
The men and women used to sealing themselves off among microscopes and glass vials were brought face to face with Anne, the mum of a seven-year-old with ALD, or Joe, a year-old with MS. The point was brought home forcefully: scientific progress is not just about academic laurels, but about real people.
Some researchers jumped at the chance to engage with people whose lives were affected by disease; but many criticised the venture as wrong-headed. How could mere lay people keep up with scientists' discussions? Why should scientists put up with an extra level of accountability? If my father and stepmother's attitude to medical research was unusual, their decision to keep Lorenzo at home was treated with even more suspicion. Friends of the family, former colleagues of my father's, even relatives urged them to farm out Lorenzo to a specialist home, where he could be kept out of sight.
I remember the horror on a friend's face when he learned that Lorenzo was at home. He, who had loved the film and applauded the theory behind the Myelin Project, could not cope with the mess and self- sacrifice that illness entailed. He was shocked when I explained that my stepmother only rarely left her son's bedside, and that my parents had given up going to the theatre, cinema and parties in order to dedicate themselves to their son. I tried to explain that Michaela and my father could do no differently.
Their beloved son needed them. The fact that Lorenzo was unable to fend for himself made this a moral, as well as an emotional, imperative. My father and Michaela saw themselves not only as the loving parents of an ALD child, but as human beings with an immense respect for, and duty to, life.
In a culture where grandma is put in a home if she becomes incontinent and a disabled child is seen as a burden, this goes against the grain. What of Lorenzo's own quality of life? Did his gentle, wide-eyed expression belie suffering, or did he bask in the love that surrounded him? It was difficult to gauge, as Lorenzo could rarely communicate - by turning his head or blinking.
But as doctors had given him only two years to live and he survived 22 more, I believe that he did want to live. This was a tribute to his parents' extraordinary care. In order to make Lorenzo feel at the centre of the household, Michaela moved his bed into the living room.
There she would read to him or play him music, while nurses worked in shifts to dress, bathe and feed him.
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