The boy upon whose life the movie Lorenzo’s Oil was based died, aged 30. “On May 29, the family of Lorenzo Odone celebrated his 30th birthday. He died the next day. He had lived 22 years longer than doctors predicted when they diagnosed him – at the age of six – with an incurable, degenerative disease of the nervous system. His continued survival was attributed to an oil which his parents, Augusto and Michaela, had invented.” Their home, which ought by rights to have been a depressing place, was instead a shrine to love.
In the kitchen, still stuck to the fridge, are precise instructions in English and Spanish for his carers. Another list provides contact details of his six doctors. In the living room, above the day bed where he received physical therapy, is a diagram showing the correct positioning of the pillows and rollers to support him. During all his years of illness, he never developed a single bedsore and, until his death, had never suffered from pneumonia, which is common among ALD patients. …
“The main thing now is that Lorenzo is with his mother. My goal is for him to live on. I made a promise to him that other children would know his story and about his life before he became ill. I will honour that promise.”
Maybe Edith Piaf understood. We find and we lose. And are the better for it.
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