• Giacomino Nicolazzo

Beyond What We Know...


BEYOND WHAT WE KNOW...

May 2021


I tend not to believe in magic...though I do admit things that look like magic happen every day. I prefer instead to think there are incredible things that occur within the nature of creation, unknown and un-understandable to us, that take place and defy our reasoning.


Sometimes a story comes along that is so inspiring...so incredible...so amazing, that it makes one question just what we are actually capable of accomplishing in our own lives. This is one of those stories.


I am a bit embarrassed to admit that at the time I heard of and read this story, I had no idea that it had already been made into a movie! But I am actually quite glad that I found out about it the way I did. The movie ruined the story as only Hollywod can do! Whoever thought it was a good idea to cast Nick Nolte and Susan Sarandon as an immigrant Italian couple needs to look for another form of work!


Now I must admit, if I had heard a story about how the parents of a young boy by the name of Lorenzo Odone endeavored to find a cure for an incurable disease, the one he had been diagnosed with, having little to no knowledge whatsoever about medicine, I might have dismissed it as just another implausible and feel-good kind of story. It was just too far beyond what most people think of as possible.


But after I read about it and verified its truth and watched a bit of the movie, it gave me pause to think about what else people consider “impossible” in their own lives.


The story takes place back in 1984. Augusto and Micheala Odone were the proud parents of an only child...his name was Lorenzo.


When he became six years old, they noticed that he would lose his balance while standing or he would stumble when he walked. They also noticed that when these things occurred, Lorenzo would become nauseous and feel such a way that made him quite irritable and ill-tempered. They took him to their family doctor who referred them to specialists. After many doctor visits and dozens of tests, the specialist diagnosed Lorenzo with a rare disease called adrenoleukodystrophy.


“I am sorry,” the doctor said to Lorenzo’s parents. “There is no treatment for your son’s condition. He will continue losing his balance. In time he will become deaf and the disease will rob him of his vision as well. Eventually he will die of aspiration. I don’t believe he will live more than another year, maybe two.”


Augusto and Michaela refused to accept the doctor’s prognosis and so they consulted several other doctors and specialists. They found a scientist in a hospital that dealt with patients in the final stages of the disease. But the doctor there said the same thing...there simply was no known cure or treatment for Lorenzo’s disease.


“You need to accept the hopelessness and futility of your son’s circumstances,” he told them. “There is just nothing we can do for him.”


But Augusto was a fighter. He refused to accept such a terrible situation. He would spend the family’s savings if need be and expend every ounce of energy he had, searching for a positive solution.


“If no cure exists,” he said to Micheala on their way back from the hospital, “then I will just discover one on my own."


And that is exactly what he set out to do. Unfortunately, Augusto was faced with some huge obstacles.


He had only a high school education and his understanding of science and medicine was miniscule. There were terms and chemical formulas of which he’d never heard before. But his spirit was strong and his heart indefatigable.


What he did not or could not understand, he took to doctors and pharmacists and professors at a university. Eventually he learned how certain destructive enzymes cross cell membranes and how the long-chain fatty acids were accumulating within his son’s body.


By day, Augusto worked as an analyst in a local bank. But at night he scoured research papers and medical journals. He worked tirelessly and put all his efforts into figuring out how the disease spread within his son’s blood cells.


Once he knew as much as he could, he became focused on discovering a cure. But time was running out. Lorenzo’s condition had indeed worsened and just as the doctor had predicted, he lost his hearing. Soon he would be blind.


One evening, about seven months after Lorenzo’s diagnosis, Augusto had his ‘aha’ moment. He finally began to see a possible solution...a cure! And it came from the most unlikely of places.


Lorenzo, in what can only be explained as a spark of divine inspiration, began looking at the ingredients he used to make his Italian recipes, especially the oils, and how they interacted with the other ingredients. He reasoned that combined, they might soak up the deadly acids that were accumulating in his son’s body and were attacking his nervous system.


When Lorenzo took his theory to the doctors and researchers, without exception they all said the same thing...


“We know you are hopeful Augusto,” they said to him. “We know you want to believe your boy can be saved. But it is impossible. It simply can’t be done. Certainly not with the oils you find in your kitchen.”


Refusing to accept their findings, Augusto went back to the hospital, taking with him this time his theory and findings as well as his son.


At first, the doctors and researchers there were just as skeptical as the other doctors. After all, it’s absolutely unheard of for a complete amateur in medicine to develop a cure to such a complex neurological disease...one that professionals had been studying and struggling with, without success for decades. But they eventually, and reluctantly I might add, agreed to test the oil on Lorenzo. They were absolutely stunned and amazed to see that the treatments were having a huge impact on his condition. While it didn’t cure him completely, it did halt the progress of his disease.


Incredibly, Lorenzo lived for another twenty years and when he died, his death was caused from an automobile accident, not the disease from which the doctors had originally said would kill him in a year.


Sadly, it took until 2005 for the doctors to publish a study that would ultimately prove the treatment actually worked. They came to call the treatment Lorenzo’s Oil.


This all sounds so impossible, doesn’t it? Someone with only a high school understanding of science, studying enough about a rare disease to find a treatment for it? And in less than two years? But we know it’s not impossible because it happened.


And this is the point of this month’s blog. It seems so easy to define what’s possible and what isn’t. We tend to use our perceptions of things we’ve seen before to help guide us in what can actually be done. But defining what’s impossible is not as clear as we’d like to think.


You see, our perceptions of things are largely based upon our personal experiences. This in itself should tell us there is a huge gap of knowledge about experiences that haven’t been tested yet.


Augusto Odone went into that unknown area of experience. He dove head first into a place where no one had gone before. Because it had never been done before, the professionals were ready to dismiss it as “impossible”. But they were wrong.


If Lorenzo’s parents had simply accepted his diagnosis and prognosis, Lorenzo would have died much earlier in his life. The only reason he did not...the only reason a cure was found, was because of his father’s determination and willingness to fight and look beyond what he knew.

Make no mistake about it. What Augusto and Micheala did was a long-shot...a huge long-shot. But there is something strange and beautiful about life. Sometimes even the long-shots pay off. It shows us, unequivocally, impossibility is only a state of mind!


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