Lorenzo's Oil

Lorenzo’s Oil is a heartrending movie about the true-life story of a young boy who becomes diagnosed with Adrenoleukodystrophy (ALD). The movie depicts the downhill course of Lorenzo’s disease, the journey his parents face, and their struggle combating the illness while overcoming conflicting opinions of those closest to them. The main theme that appears time and again is the battle of two parents fighting between their devout love for their son’s life and the “leisure exploration” of the disease by the scientific community.

Lorenzo was diagnosed with ALD in 1984 when he was just five years of age. ALD is an inherited genetic disorder that damages the myelin sheaths surrounding nerve cells in the brain. Also, brain damage occurs because of the enzyme that breaks down the very long chain fatty acids is impaired so the body cannot metabolize the acids properly and therefore accumulates toxic amounts in the central nervous system. The childhood form of ALD, which Lorenzo is diagnosed with, is the most severe with an onset between ages 4 and 10. The most common symptoms are behavioral changes such as abnormal withdrawal or aggression, poor memory, and poor school performance. Other symptoms include loss of sight and the ability to walk, learning disabilities, seizures, poor articulated speech, difficulty swallowing, deafness, fatigue, and progressive dementia. The most horrifying part is that death usually occurs within a couple of years after prognosis.

The movie moved me in many ways. I found myself in constant struggle when deciding whose side I agreed with more. When Lorenzo was first diagnosed with the disease, Augusto “asked the doctor if he could read the medical papers” and the doctor responded, “Don’t bother, you won’t understand them.” I found it heartless of any one person to tell another that they are incapable of doing something. It reinforced the fact that anyone can do anything they set their mind to, only if they are determined and focused enough. Lorenzo’s parents were resolute in finding a treatment for their son: the oil, which was a combination of two oils, oleic and erucic acid. I was delighted to watch Augusto and Michaela’s determination throughout the course of the movie. Again, I felt for Augusto and Michaela Odone because it appeared that they were alone with no one to help them. In a striking quote, Michaela tells Dr. Nikolais, “The life of one boy is not enough reward for you to risk the reputation of the institution and the esteem of yours peers.” To some extent I agree that scientists cannot go out on a limb for any one thing without complete evidence. A scientist must be able to combine all their knowledge into a well-defined thesis and experimental protocol in order to receive the money needed to carry out the research. On the other hand, it is truly distressing to hear a person’s cry for help knowing that nothing can be done hastily without timely proof and assertion of the facts.

Since the movie was released, many people, including scientists, have opened their eyes to ALD, which affects more people than first projected. Important to note, though Dr. Hugo Moser was depicted as an impersonal scientist throughout the movie, he truly cared and dedicated his entire life to researching the disease and conducting experiments. Before his death, Moser was looking to find a marker that could predict the onset of ALD in patients before diagnosis.

I was amazed to find out that Lorenzo is still alive today at age 29 and is “still holding his own” (Augusto Odone) though he is still almost totally paralyzed with some exceptions (blinking his eyes and moving his fingers and head). I have learned that there has been no real success on the re-myelination of the nerve cells of the brain; however, constant research is still being done. Although Mr. and Mrs. Odone have past away in recent years, I was happy to hear that his old friend Oumouri still cares for him today. Their legacy will continue to live on through The Myelin Project that they helped create. The Myelin Project’s goal is to find a way to restore the myelin sheaths that ALD destroys. For now, Lorenzo still waits for this to be achieved so that he may look forward to living a normal life.

For more information on The Myelin Project:
http://www.myelin.org/

Lorenzo’s Oil: The full story:
http://news.bbc.co.uk/1/hi/health/3907559.stm

The mixed legacy of Lorenzo’s Oil:
http://www.post-gazette.com/healthscience/20010508hlorenzo1.asp

A Real-Life Sequel to ‘Lorenzo’s Oil”:
http://www.washingtonpost.com/wp-dyn/content/article/2007/01/27/AR2007012701542.html

The use of the movie “Lorenzo’s Oil” as a Teaching Tool:
http://carbon.cudenver.edu/~bstith/loren.htm