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Lorenzo Odone, the child featured in the film Lorenzo’s Oil has died. I have always wondered what happened to this boy, even though it must have been ten years since I saw the film. I thought, after reading several times that the film gave false hope to the parents of Adrenoleucodystrophy (ALD) sufferers, that Lorenzo must have died soon after the film was made in 1992.
ALD is a genetic condition, affecting mainly boys, where the body produces a fatty acid that accumulates in the
nerve cells and damages the coating of the nerve fibres, called myelin. A rapid loss of motor functions follows, leading usually to death within two years. When Lorenzo’s parents, Augusto and Michaela Odone, were told of this prognosis they researched until they came up with Lorenzo’s Oil, which stopped the progress of the disease but did not reverse the brain damage. Augusto and Michaela (until her death in 2000) continued to research for a cure and care for Lorenzo until his death late last month. They had no medical training.
Lorenzo died of pneumonia on May 30 at age 30.
While the film and Lorenzo’s parents were accused of giving false hope, some studies have suggested that the oil can be used as a preventative measure. Out of 120 children it was used on, 83 did not develop the disease. Unfortunately another family member needs to get the disease before the pre-symptomatic children are tested to see if they carry the gene. I also feel that the film was more about a parent’s love for their child, and less about a miracle cure, which is why the film was so successful. Most every parent can sympathize with loving a child.
Recently scientists claimed a breakthrough that suggests stem cell treatment could rebuild the myelin wall, the part of Lorenzo’s brain that was damaged by the disease.
Written by Helen
7 Responses to “Lorenzo’s Oil real life inspiration dies”
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I thought this movie spoke to alot of different levels as does the real story. First, SCIENCE is evolving at all times and no body can speak for your child as you can. So having no medical training is never a real reason to not try and solve the puzzle. Often times I find medicine lacking whereas people living with something daily tend to have a better scope on the disease they live with including what aggravates it.
The other thing, that it did, was said as parents you have a voice and you have a brain and you have love for your child. That combination can allow someone to lift a car off a human being… metaphorically as well as truly. And in this case the car was a disease.
Why should any parent accept a death sentence for their child? And this child, lived so much longer than it was ever anticipated.
There are alot of parents out there with no medical training making break throughs every day with their children and what they were told. My best friend was told her baby would be on a feeding tube and massively brain damaged forever. She didn’t accept that answer and today her child is a thriving happy 5 year old who goes to school. She has ADD but she does not have any of the problems her child should have had according to modern medicine.
It is sad he passed. His parents are as much a miracle as he was.
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I hope their research legacy lives on and that many families are able to benefit from their love and dedication but I can understand why the medical community would feel uneasy about their progress. All we can really do is say that a person has a certain condition and that, statistically speaking, this is what happens to the majority of people with this condition. But, as with any statistical group, there are outliers, those who do not conform to the statistical norm. So they appear to have atypical symptoms or an atypical course of the disease and their prognosis is more difficult to predict.
The challenge with rare diseases is that finding a valid pool of patients from whom to learn even the basics about the disease is very challenging. To say nothing of trying to test and validate treatments. Essentially, you kind of wait until a development occurs and see if it could be applicable to your disease state.
What these people did was essentially perform non-sanctioned medical research on their son. Is that ethical? Fortunately, they weren’t medical professionals because, if they were, they’d have one heck of a dilema.
I can understand their frustration and that of so many other families but I’m not so sure that setting up your own lab and testing on your child is the answer. For other medical professionals, their work is unvalidated and gives them an avenue to explore but little else. I’d be surprised if another doctor was willing to prescribe this “oil” to his patient, given that there is no valid research to support its safety and efficacy.
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@silly lilly: I agree with you one hundred percent.
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That’s amazing that he lived so long and that Lorenzo was able to outlive his own mother was testament that a mother’s love is extraordinary.
I hope research continues despite this family’s loss.
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Thank you for posting this story.
Anyone who knows anyone with any neurological disease or disorder suffers similiar symptoms. Whether it’s MS, or ALS or in-between, let’s pull together and pray for treatment or better yet, a cure.
God bless.
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I find DrM’s perspective from the “other side” interesting and giving balance.
This is a very inspirational family with such a motivating story. i only hope the father has a good support network around him.
rest in peace.
jinx:
silly lilly:
DrM:
Codzilla:
Elizabeth:
Mairead:
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Wow that was just an amazing story. His mother died before him of lung cancer as I recall. I believe they lived in El Segundo for a while and would be covered by the local news on occasion. His parents did an amazing thing, and while not full proof, they have helped so many others, while being vilified by the medical profession and other parents of similarly afflicted children. To think that 83 out of 120 children lived normal lives is a true testament to the entire family. I am going to netflix that movie again. Thanks for the update.
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