Movie Summary
The movie starts out in the Comoros Islands, Africa, where the Odones have lived among the people for many years. Lorenzo Odone, a very bright boy, is shown speaking fluent Comorian to his friend Omuori Hassane. Not long after he comes back to the United States, Lorenzo exhibits strange symptoms (blackouts, fits, etc) of a rare disease – ALD. Adrenoleukodystrophy is a degenerative disorder corroding the Myelin Sheath on neurons, hindering rapid transfer of signals to the next neuron. ALD was just coming under the radar of neurologists, who had not yet come up with a treatment. Lorenzo is first put into the research study group run by Professor Nikolais, who prescribed a non-saturated fats diet, in order to eliminate the increase in saturated fats in Lorenzo’s body, which are the main players in stripping off myelin. Upon noticing that Lorenzo’s saturated fat levels are increasing, rather than decreasing, the Odones, Augusto and Michaela, take an initiative to thoroughly familiarize themselves with the sciences in order to better understand their son’s medical condition.
On their quest to help Lorenzo, they encounter resistance from the ALD foundation to their new ideas that go against Prof. Nikolais’s research study and the studies of other doctors. Relentlessly, the Odones continue to learn and hypothesize ways to help their son. After organizing an ALD conference with doctors from all over the world, the Odones learn about a potential treatment – Oleic Acid. They order a digestible form of Oleic Acid and begin treating their son with it, using it as salad dressing in his salad. Initially, they see a decline in his saturated fats, however the progress platues at a point, still too high for him. In less than a year, Lorenzo lost a lot of motor control, speech, and other abilities.
Michaela’s sister was the main caretaker of Lorenzo. However, after she leaves due to squabble between herself and Michaela, proper nurses become hard to find and very hard to keep. Michaela then invites Lorenzo’s old friend Omuori from the Comoros Islands, to stay with them and take care of Lorenzo. Shortly afterward, while on the search for a new nurse, Michaela’s sister comes back to take care of Lorenzo, ending the search altogether.
In the meantime, Augusto finds out about Competitive Inhibition through Erucic Acid. Oleic Acid only dealt with C-18, whereas Erucic Acid would deal with upper carbons. Since, local pharmaceutical companies don’t make a digestible version of Erucic Acid, the Odones find an English pharmacist willing to make the form of Erucic Acid required. Upon consumption of the Erucic Acid with the Oleic Acid, Lorenzo’s C-24 and C-26 levels become normal – a feat that no research group was able to accomplish. He also started ‘communicating’ with his parents through eye-blink responses and moving his finger.
Movie Critique
I truly enjoyed the movie. On of the themes of the movie is still resonating in my head – Doctors do not have the final say in anything. Also the cliché comes to mind – “…where there is a will, there is a way.” Even after discouragement from other ALD parents, and doctors who are more accredited than them, the Odones are not willing to blindly accept the answers of the doctors. Augusto and Michaela wanted results, and they actually put in everything they had, physically, mentally, emotionally, and financially, and got results.
Our society today is not much different from the one portrayed in the movie. Even now, once doctors pass their final verdict on a patients life, not many people put in their effort and time to come up with a cure themselves. “It is preposterous!” we think. “How can we do what doctors can’t?” We don’t consider the possibility that our logic and that of a doctor holds the same value, especially if we enter the playing field with the necessary knowledge to make sense of the situation at hand.
I was very happy to know that Lorenzo Odone is still alive and celebrated his 28th birthday in May 2006. He is deprived of most of his functions but still communicates through blinking his eyelids to say no, and moving his finger to say yes. Michaela Odone died of Cancer in June 2006, and Augusto Odone and Omuori still take care of Lorenzo. Mr. Odone still works in the Myelin Project headquarters in Virginia.
I really liked the emphasis the movie put on hidden agendas of the intellectual research community. Unless the research gains monetary endowment or public interest recognition, scientists do not bother with testing or experimenting with possible treatment, regardless of what benefit one, victim, might attain. This theme was evident in the 1980s and still is in this day and age.
All of this begs the question, “are we learning from past mistakes?”
I found an article about Lorenzo in the Inquirer:
http://carbon.cudenver.edu/~bstith/Lorenzoarticle.htm
Sunday, September 23, 2007
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