Lorenzo's Oil Response

Update known information on the use of the oil for ALD and

rewrite one of the scenes involving parents and scientists/physicians.

The film, Lorenzo’s Oil, paints the tale of two parents who undergo an epic miracle-quest to discover a cure for their son, Lorenzo, who was suffering from Adrenoleucodystrophy (ALD), a genetic disorder affecting young boys which deteriorates the brain. The film was typical of a Hollywood production in that it was dramatized and somewhat over-exaggerated. Lorenzo’s parents, Augusto and Michaela Odone, were in a desperate situation; their son was quickly deteriorating, as ALD typically leaves children paralyzed, blind, and unable to speak within a year, and the doctors were responding in seemingly the most pessimistic and defeatist ways possible. The reality presented was bleak, not much was known that could be done for Lorenzo and when Augusto asked the doctors if he could read the medical literature surrounding the particular disorder, he was told, “Don’t bother, you won’t understand them.” However, nowadays the medical protocol surrounding the treatment of children who have or are at risk for ALD has evolved considerably.

The film has been criticized for its presentation of ALD and the use of Lorenzo’s Oil, to the extent that the film has been even called a “fairytale picture of a miracle cure”. With the progression of time and emerging new medical research, this exaggerated view of Lorenzo’s oil has been challenged and debunked. What had been previously known was that brain damage from ALD was somehow causally related to elevated blood levels of long chain fatty acids. What was unknown was how to take proactive measures against this condition, typically optimism was considered the only positive option. Augusto and Michaela were vehemently determined to find a cure, and after Augusto consulted world experts in the matter, it seemed like they might have found a possible answer for Lorenzo’s ills. Oleic acid, an edible mixture of olive and rapeseed oil extracts, was prepared to combat the effects of ALD and has since had interesting results.

The story of Lorenzo Odone was something that came as a God-send to the Stafford family in the UK, who had one boy starting to show symptoms and a younger boy who it was revealed was genetically at risk. They immediately began to administer the oil to their older boy, Barry, who initially showed improvement but eventually died 7 years after he started treatment. The oil did not seem to be able to stop the progression of brain damage. Yet, despite this apparent setback, research into the potential uses of the oil did not stop. It has been shown that those boys who are started on the oil before they become symptomatic of ALD may never go on to actually develop the symptoms. Dr. Moser, who worked closely with this condition until his recent passing, found in his research that the oil holds a significant preventative effect. The younger Stafford son, Glenn, is still alive today and attributes his lack of becoming symptomatic to the Oil, which can half the chances of getting the disease if taken before symptoms appear. With contemporary medical knowledge where it stands, it would reason that many children who would have otherwise suffered from this condition will no longer have to do so. For example, had Lorenzo been conceived yesterday, when he ends up being born the vignette from the hospital would look much different then how it did within the film. Most likely, when Lorenzo ends up being delivered he would have a blood sample removed for different types of testing. Some of these tests would be tests for genetic disorders and conditions, among which ALD is included, and would presented to the family if discovered. Picture the following, Dr. House walks into the room, the mother is holding her newborn as the father stands by the bedside, he looks at them with heavy and serious eyes and tells them, “I have good news and I have bad news” to which they react shockingly to “Oh no doctor… what is it?!”. Dr House looks at them intensely before saying, “Well your boy has Adrenoleucodystrophy…” to which they reply, “Oh my lord, what is the good news?” , and House says, “That IS the good news, the bad news is that it is a terminal condition but if we start preventative treatment immediately he just might have a 50/50 shot.” “Are you serious, how is that a good thing?” cry the parents, to which House wittily replies, “Well, 25 years earlier I would have just stared at you blankly after I made the discovery, now if you excuse me, I need to go olive picking…tootles”.