Lorenzo's Oil (1992) is a drama film based on a true story that portrays the Odone family's struggle for life when they discover that their son, Lorenzo, has an extremely rare and incurable degenerative disease, adrenoleukodystrophy (ALD).
Many films intend to tell real stories with different objectives, but Lorenzo's Oil undoubtedly had and still has a public utility because ALD is not such a well-known disease, and at that time even less, so much so that there was not even a cure. The film was nominated for an Academy Award for Best Original Screenplay and Best Actress (Susan Sarandon), with Susan, also being nominated for a Golden Globe.
The movie
The plot takes place in the 80s, and it is more precisely in 1984 that we meet Lorenzo, a healthy and intelligent boy who at just 6 years old had already learned three languages. However, all of a sudden Lorenzo starts to behave strangely. After receiving complaints from the school and noting that his behavior at home had also changed, the educators believed that Lorenzo was hyperactive, even indicating that the boy would continue his studies in an "Individual Disability Class". One day things start to get worse that's when Lorenzo is taken for neurological tests.
The test results leave Augusto and Michaela Odone, Lorenzo's parents, somewhat confused: the electroencephalogram, the X-ray, and the computerized tomography are normal, that is, Lorenzo is neurologically perfect. Lorenzo is then subjected to another battery of tests, spending three days in the hospital. That's how a diagnosis was reached that pointed to the branch of diseases called leukodystrophies, and Lorenzo had one of them: ALD.
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How did the film approach the diagnosis and treatment of the disease?
Upon receiving the diagnosis, the family is perplexed, as they had never heard of such a disease. The doctor explains how the disease works as follows:
"ALD is a congenital defect in metabolism that causes brain degeneration. The disease only affects males, usually between the ages of five and ten. Its evolution is relentless, and the end is inevitable. Death usually occurs within two years of diagnosis, with no exceptions.
Lorenzo shows definite signs: an abnormal level of fat in the blood, a long-chain fatty acid, responsible for destroying the brain. There is an enzyme that should metabolize these fats, but in ALD patients, this enzyme is deficient and accumulates in nerve cells, such as obstructions in the arteries. This, in a way, liquefies the white matter of the brain."
At this point, Michaela Odone asks the doctor to be more clear, it is then that he reveals that he is still not sure how this all works, and then explains what myelin is. "Myelin is the substance in the membrane that insulates nerves, like the plastic that isolates electrical wires. Without it, the nerves cannot carry an impulse. What ALD does is corrode this substance, which causes brain degeneration, causing the body to lose function. The problem is that this disease had not even been identified 10 years ago, so it is difficult to understand what it is," says the doctor.
After diagnosis, another revelation is made to the Odone: ALD is transmitted only by the mother. Although in other hereditary diseases the combination of genes is a strong factor, ALD is only carried on the female chromosome, that is, it passes from mother to child, with the woman being just the carrier.
Initial treatment
The first treatment proposed for Lorenzo would be a very restricted diet, rich in oleic acid. Oleic acid, which also goes by the name of omega 9, is a monounsaturated fat that can be produced by our body if we ingest enough omegas 3 and 6 - essential fatty acids (not produced by our body) that must be obtained through our food (fish, nuts, seeds, and oils).
Initially, Lorenzo's diet raised expectations in the parents, who noted a drop in disease acceleration, but the result stagnated at 50%. Lorenzo's parents did not accept the situation and decided to study the case on their own. Augusto Odone dedicated hours of his day to research related to the disease and the human organism, and it was then that he discovered a possible solution: the mixture of oleic acid with erucic acid.
Despite the discovery, erucic acid had already been tested in rats and it was found to cause heart problems in animals, which could then not be safe for humans. Augusto argued that erucic oil was the main component of rapeseed oil, consumed in China and India, and they once again began a relentless search for help so that they could safely administer this component to Lorenzo's diet.
The manufacture of Lorenzo's oil
The Odones contacted about 100 manufacturers to try to have their oil manufactured, but as they were not doctors or scientists, they were not served, until they got in touch with Croda's US office. Croda is a company that creates, manufactures, and sells specialty chemicals that deliver real benefits to a variety of products, including health and beauty, engine lubricants, plastics, and more.
The Crodas were the largest producers of erucic acid in the world and Don Suddaby's work on fish oils was directly related to the high concentrations required for treatment. He agreed to help the Odone family and began to find a solution to formulate an oil from oleic and erucic acids. With hard work of up to 16 hours a day, in four months Don had Lorenzo's oil. The oil was tested on Michaela's sister and miraculous results were seen when the long-chain fatty acids disappeared from her cells.
Don Suddaby was a chemist working for Croda International in the city of Hull, UK. Don was asked to play himself in the film.
Outcome
At the end of the movie, a message is left for whoever is watching, along with images and testimonies of children who benefited from the discovery of the Odone family. In summary, the message reads as follows:
"The film was completed in late 1992 and by then doctors around the world began prescribing Lorenzo's oil. In recognition, Augusto Odone received an honorary degree in medicine. He and Michaela continue to raise funds and serve on the scientific task force known as The Myelin Project.
Human trials were scheduled for a year later, and many people were waiting to receive the first cell transplants, one of which was Lorenzo himself. At the age of 14, Lorenzo can move his head from side to side. He regained his sight and began to vocalize some sounds. He is learning to communicate through a computer. And so he awaits the next step."
Lorenzo's life after the movie
Lorenzo's health was never the same again, but he managed to live almost a quarter of a century with the disease. Lorenzo died at the age of 30 as a result of pneumonia, which, according to his father, had been contracted by accidentally inhaling food into the airways. He died on May 30, at his home in Virginia, the day after his birthday.
The reality behind the movie
Although at the time, the Odone couple believed that oil would be Lorenzo's salvation, the effectiveness of such treatment was only proven years later, and only when the patient is treated early, that is, before the onset of neurological symptoms. For this reason, it is currently possible to diagnose ALD through neonatal screening tests.
As shown in the movie, symptoms appear from the age of five, initially with auditory and visual perception difficulties, signs of adrenal insufficiency, memory loss, speech, and gait difficulties, increasing irritability, and relationship difficulties.
With regard to treatment, hematopoietic stem cell transplantation, for example, they are effective in cases that are in the early stages of brain symptoms. Bone marrow transplantation usually slows the progression of the disease, but finding a compatible donor is a slow and difficult process, not to mention the risks involved in the procedure.
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