June 27th 2008, 15:38 | Bryan Hubbard
Lorenzo died a month ago, just one day after his 30th birthday. Doctors had told his parents he would die at the age of 8 from a rare disease called ALD (adrenoleukodystrophy). It was their refusal to accept this prognosis that led them on a ceaseless quest for a cure, which was championed in the award-winning movie Lorenzo's Oil.
Throughout, they were discouraged by doctors and scientists, who told them their quest was pointless because no cure would ever be found.
In fact, Lorenzo's parents - Augusto and Michaela - did find part of the solution, and one that will help other children afflicted by one of the several conditions that attack the myelin sheath that protects the nerves responsible for transmitting messages from the central nervous system to the rest of the body.
Their achievement was remarkable, all the more so because neither were scientists or had any medical training. They just had the inexhaustible energy to do something for their son.
Sadly, there are many people like Lorenzo who are afflicted by a rare condition. ALD, for example, affects just one in 42,000 boys.
Augusto and Michaela demonstrated that a cure is not impossible; it is just that it's not in the interests of the pharmaceutical industry to spend years researching a disease that affects so few. There really isn't a sufficient profit in it for them.
Parents of these children don't need convincing of where the true heart of the pharmaceutical industry lies.