Lorenzo's Oil

Lorenzo’s Oil is a compelling and heart wrenching movie depicting the real-life story of Michaela and Augusto Odone’s unremitting struggle in procuring treatment for their young son, Lorenzo, who is inflicted with a rare yet lethal degenerative disease called ALD (adrenoleukodystrophy).
After spending 3 years in the Comoros Islands (off the coast of East Africa), the Odones move back to the United States where their lives begin to crumble as Lorenzo exhibits extreme irritability and unexplainable rage. Augusto and Michaela do not pay much attention to their son’s uncharacteristic behaviors initially. However, when Lorenzo exhibits periods of deafness and frequent fainting/dizzy spells, they become alarmed and take their son to consult a number of doctors.

Eventually, Lorenzo is diagnosed with ALD, a sex-linked (or X-linked) disease which causes rapid degeneration of the brain by corroding the myelin sheath; a fatty covering which serves to insulate neurons in the body. Neurological functioning becomes progressively worse, ultimately resulting in death. ALD patients accumulate an abnormal amount of long-chain saturated fatty acids, as they lack the enzyme needed to metabolize the fat. Hence, the fatty acid tends to build up leading to lethal consequences. ALD is passed from mother to son and the symptoms usually occur within 5-10 years of the child’s life. Death is expected to follow within 2 years of the emergence of symptoms.

The Odones are devastated to learn that not only has their child been inflicted with this debilitating disease, but that there is no known cure as of yet. Lorenzo is enrolled in a clinical trail, where his neurologist ( Dr. Nikolas) prescribes a diet low in saturated fat in an attempt to bring down Lorenzo’s long chain fatty acid levels. This attempt however, fails as Lorenzo’s body continues to manufacture an increased level of fat in order to compensate for the fat lost as a result of the new diet. The Odones soon learn of other cases where the diet has been ineffective as well. Following a string of uncooperative doctors and other medical professionals, Michaela and Augusto decide to take matters into their own hands. As Lorenzo’s condition rapidly worsens, they decide to read everything published about the disease and its possible biochemical basis.

Finally, the Odones come across a type of olive oil, which is a combination of oleic and erucic acids. When this oil is incorporated into Lorenzo’s diet, the parents witness a 50% drop in his saturated fat levels. Eventually, the levels revert back to normal. However, Lorenzo continues to possess limited neurological functioning.

Lorenzo’s Oil had a profound impact on me. ALD was not a disease I was previously aware of and its rapid progression was frightening and painful to watch. The part of the movie that affected me the most was when Michaela could not understand what Lorenzo was attempting to say, even though she could understand him perfectly well earlier that morning. I found myself shocked at the alarmingly rapid pace of the disease. The movie also did a laudable job in highlighting the lack of research regarding obscure or uncommon ailments. It brought to light the question of weather it is acceptable for the medical community to place less importance on acquiring a cure for diseases that affect a relatively small portion of the world’s population.

Despite the success of the movie in helping its viewers grasp the excruciating pain and biochemical basis of ALD, I found the ending to be unrealistic and misleading. When I began to research on Lorenzo Odone and the supposed “miracle cure” faculty of the oil, I unfortunately found that it did not help Lorenzo gain any significant neurological functioning back. He is still alive - surprisingly having outlived both his doctor and his mother - however, he is as bedridden now as he was previously. This led me to revoke a question which I have grappled with many times: is it the quality of life that is important or the quantity? Nonetheless, I did find information documenting the oil’s preventative capabilities. Young boys who were identified as potential victims of ALD were given Lorenzo’s Oil. This seemed to bring down their chances of being afflicted with the diseased exponentially. Hence, even though the oil may not be the answer for those already suffering from ALD, it seems to have an affect in preventing the onset of the disease.

Research is still continuing today to acquire a dependable cure for this disease. The only way this can be done is through repairing the damaged myelin. The Odones established the Myelin Project to spearhead research to help ALD inflicted patients regain their motor and cognitive abilities. This, I am sure, has helped the outside world understand and sympathize better with those suffering from ALD and their loved ones.

*For more information regarding the preventative ability of Lorenzo’s Oil read: Lorenzo’s Oil: The Full Story by BBC News.
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Also take a look at “Research Backs Lorenzo’s Oil Treatment of Disease”
URL: http://www.boston.com/news/nation/articles/2005/07/12/research_backs_lorenzos_oil_treatment_of_disease/
*For more information regarding the Myelin Project, visit the home page:
URL http://www.myelin.org/
* For more information regarding the symptoms and treatment of ALD visit “ALD and Lorenzo’s Oil.”
URL: http://rarediseases.about.com/cs/ald/a/041301.htm