The parents who find cures
Published 27/02/2010 | 05:00
The Crowleys' search for a cure for their children resembles the story of Augusto and Michaela Odone, whose son Lorenzo was diagnosed with the apparently untreatable nerve disease Adrenoleukodystrophy (ALD) in the early '80s. Their case later formed the basis of the movie Lorenzo's Oil starring Nick Nolte and Susan Sarandon. Ignoring the claims of medical experts that nothing could be done, the Odones persevered, recruiting researchers, visiting doctors all over the world and looking at animal experiments.
Eventually, they discovered a therapy by which they added an oil made from olive oil and rapeseed oil to Lorenzo's diet. The oil helped to halt the progression of the disease, and Lorenzo regained his sight and started swallowing for himself.
Sadly, Lorenzo died at home in Virginia in May 2008, one day after his 30th birthday, having come down with aspiration pneumonia. He had lived more than 20 years longer that doctors predicted, and is the oldest known survivor of ALD.