An Amazing Story of the Human Spirit

People are amazingly powerful and capable of exceptional accomplishments deep down inside. Most people rarely, if ever, tap into their innate power and abilities simply because they have never been exposed to situations that demand they rise to a higher level, or because they never had the knowledge, training or inspiration that allows them to tap into their power.

One remarkable example of the power of the human spirit is the true story of a married couple, Augusto and Michaela Odone. They have a son, Lorenzo, born in 1978. Augusto is an economist working for the World Bank, and Michaela stays home to raise their son.

Lorenzo is a normal, spirited, happy boy until the age of eight when he develops neurological symptoms such as loss of hearing and tantrums. Lorenzo is brought to a doctor and is diagnosed with ALD, a rare neurological disease that is fatal within two years from onset. Just as bad, over the two-year period prior to death, ALD destroys the neurological system of the body, causing blindness and total paralysis; it’s an agonizing and horrible disease.

A person with ALD becomes nearly a complete vegetable, unable to eat, move, see, speak, although the mind stays intact. Augusto and Michaela cannot accept the doctor’s fatal prognosis, and especially cannot accept the terrible fate of their son as the disease progresses.

So they take Lorenzo to several different specialists. All of them tell Augusta and Michaela there is no cure and no hope. These specialists attempt to get the parents to simply accept that Lorenzo will die within two years, and a terrible death at that. All of the doctors this couple see have no hope or ideas to offer; some of them even become irritated with Augusto and Michaela for not giving up. But Augusto and Michaela are determined to save their son.

They find out that ALD is so rare that it isn’t “worth” the attention of doctors, researchers, and pharmaceutical companies to expend all the time and resources to discover a cure. There weren’t enough cases of ALD worldwide to attract the attention to attempt a cause and cure; to put it bluntly, there wasn’t enough profit and glory in pursuing a disease as rare as ALD.

Augusto and Michaela travel to visit different researchers and specialists, getting more and more knowledge and information about this disease. Their immediate goal is to find the cause; then they can search for a cure.

This is the situation Augusto and Michaela face: their beloved son has a terrible, paralyzing, agonizing disease that leads to death within two years, and there has been very little research and data about ALD. The cause is unknown, and there is no hope for a cure. But Augusto and Michaela do not give up; they don’t allow the existing situation to overcome them. Augusto spends hours each day studying the research that had been done on ALD. In order to fully understand this research and take it even further, Augusto teaches himself all about human anatomy, organic chemistry, physiology, and neurology. He becomes as knowledgeable as many doctors. He is also racing against time as his son is degenerating rapidly. Augusto and Michaela travel to visit different researchers and specialists, getting more and more knowledge and information about this disease. Their immediate goal is to find the cause; then they can search for a cure. They are relentless. They irritate doctors and researchers with their questions, their refusal to accept what these doctors and researchers tell them, and their single-minded intention to save their son. Augusto and Michaela attend a support group for people whose children have died from ALD. Even these people become hostile toward Augusto and Michaela because they continued looking for answers. These parents have already lost their children to ALD. They don’t want to hear about any attempts to find the cause and cure, they have already accepted the doctors’ pronouncements that it is hopeless.

In their travels and meetings with doctors and researchers, Augusto and Michaela are surprised to learn that there has never been any meeting of doctors and researchers from around the world regarding ALD. So they organize a symposium of international doctors and researchers. They get these people in the same room for the first time ever and get them to brainstorm and share data that has never been shared before. In this way, Augusto and Michaela increase their own knowledge and understanding of ALD.

They meet a researcher who has some ideas of his own about ALD. This researcher compares notes with Augusto and Michaela, and they progress a little further.

All this time, Augusto continues to study and teach himself all about the human body and medicine. He becomes as knowledgeable as most doctors along the way. Finally, Augusta figures out the root cause of ALD. All his studies, research, and coordination of information pay off. Very quickly, Augusta and Michaela believe they have devised a therapy of sorts involving two types of oil extracts. They are getting closer to an ultimate cure, but they still need to refine their treatment a little better.

Augusto and Michaela discovered the cause of ALD – something no doctor or researcher had been able to do.

Now that they know the cause and have seen some improvement with the oil extracts, they understand what treatment is needed. But the treatment requires a special distillation and refinement process, and for this, they contact over a hundred firms around the world. None of these firms will help these people, but they persist in their search. They finally meet a British chemist who is able to distill the exact formula needed. The formula works. The disease is halted within Lorenzo. But unfortunately, the disease has progressed too far, and Lorenzo is permanently damaged. But he has some improvement and actually lives to the age of thirty before passing.

Augusto and Michaela Odone found a cure for ALD, and future people will be spared the agony of this horrible disease. An economist and a housewife accomplished something that doctors and researchers – trained in anatomy, physiology, medicine, research, and disease – failed to do. And they accomplished this feat in around a year, training themselves practically as physicians along the way.

An economist and a housewife endured the misery of watching their beloved son suffer and head toward death. They had numerous doctors, researchers, their families, their friends, and even their support group members try to dissuade them from continuing their quest. These people faced enormous obstacles, impossible obstacles for anyone outside the medical field. Yet they achieved their goal.

And they did all this 40 years ago when technology and research weren’t what it is today.

This story has been portrayed in a movie made in 1992, Lorenzo’s Oil. The short description of the story presented here doesn’t begin to capture the agony, the overwhelming obstacles, the heartbreak, the impossible odds, and the incredible accomplishment that Augusto and Michaela faced and achieved. This story is an amazing demonstration of the power and capability of people. It’s also an amazing demonstration of the power of purpose and intention. Watching this movie will change your mind and point of view in a profound way.

Most people have enormous inner strength, power, and potential capabilities that even they are not aware of. All that’s needed is the right mix of environment, knowledge, training, and leadership.

Joe Kerner
Joe Kernerhttps://www.klhgrowthstrategies.com/
Joe Kerner has been a business owner and management consultant for 30 years. He has worked with hundreds of businesses, business owners and executives, spanning several industries and professions. He is a recognized expert in such areas as leadership, management, organizational development, efficiency, personnel development and training, sales training and business planning. He has helped his client business increase their profitability, growth, efficiency, and productivity. He has consulted and coached businesses in such industries as health care, software development, biotech, construction, financial services, scientific instrument firms, systems analysis, travel, hospitals, and insurance. Joe is also an accomplished speaker and has delivered over 1,100 seminars and workshops covering such areas as leadership and management, operations, personnel development, and efficiency. In 1998, Joe was a co-founder of a very successful health care group in Virginia and North Carolina. He served as Vice President of Operations and managed the entire group. Under his leadership, this group increased revenue by 300-400% within three years. This group was sold for a high profit in 2013. Joe holds a Master of Science degree in Engineering from Johns Hopkins University. He has also completed an extensive and rigorous management training program, the Organization Executive Course. This is an intensive 2,000-hour curriculum covering the fundamental principles, technology and advanced systems of management, leadership, organization, executive training, personnel development and management, management tools, marketing, and sales.
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Jonathan Solomon

Joe, thank you for sharing such an amazing story of parent love and perseverance.

A parent’s love for their child is unconditional. This love never ever waivers. It is perhaps the toughest job on earth, raising a family which comes with no shortage of challenges and obstacles. I salute this couple for the love, devotion and insistent belief that they will somehow bring about a change.

“ Parental love is the only love that is truly selfless, unconditional and forgiving.”
Dr T.P.Chia

“The depth of the love of parents for their children cannot be measured. It is like no other relationship. It exceeds concern for life itself. The love of a parent for a child is continuous and transcends heartbreak and disappointment.” James E. Faust

Anonymous
Anonymous

Thank you for all this, Jonathan. I appreciate it.

Melissa Hughes, Ph.D.

What a powerful story, Joe! Heartbreaking and hopeful at the same time! At the end you say, “Most people have enormous inner strength, power, and potential capabilities that even they are not aware of. All that’s needed is the right mix of environment, knowledge, training, and leadership.” I would only add “purpose” to that list. Without purpose, there is no passion for something better.

Thank you for sharing this story!

Darlene Corbett

What an amazing story! I remember seeing the title of the movie but never saw it. Now I must. Thank you, Joe, for sharing this and expressing the belief many of us have about the unique qualities each of us is carrying. Truly, many people never discover the hidden treasures which lie within.?

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