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A Year of Living Positively-Day 156

I had a decent rest but I did not sleep as long as I felt I needed to. Once again, I can blame it on the TV, or rather, my weakness when it comes to watching TV in bed. 

I can say that the program I indulged in past my planned bedtime was quite worthwhile. It was the biographical film about the Odone family's heroic and astounding project to save their son and other children, called "Lorenzo's Oil." Because their nine or ten-year-old son, an only child, was struck with a rare disease, the parents and aunt to everything possible to find a solution. It is an inspiring story about the fight for life that raises many questions.

The disease is genetic disorder passed through mitochondrial (maternal) DNA called ALD and it is deadly without a treatment because it builds up a bad kind of fat in the nervous system, gradually blocking communication between the brain and the central nervous system, so that all body functions shut down within about 24 months. It strikes boys between the ages of six and 10 years.

The case of Lorenzo Odone began in the mid-80s. His sudden fits of rage, loss of balance, and troubles in communicating surprised everyone because he was normally very bright, happy and communicative, and led his parents to pursue diagnosis. Finally, a doctor discovered that he had ALD. Every boy who had had the disease before had not survived. There was no cure, and the disease was not well understood. The parents consulted and read widely, trying to understand the disease and find the best possible treatment. Learning that the latest treatment, a therapy feeding natural oils into the bloodstream, was only working partially, Mr. and Mrs. Odone threw themselves into researching the problem themselves, spending long days in libraries, making phone calls to experts such as chemists and medical doctors, getting to know other parents of boys with ALD, and making every expense to do it all and make their son as comfortable as possible. They would not give up! Most people told them to give up and even accused them of prolonging the boy's suffering, but the Odone's were making progress. They organized a symposium of scientists and physicians and pitched proposals that they had developed to them. The flew a friend of the family from Africa to visit Lorenzo. Their passion and devotion are truly mind-blowing.

The most spectacular aspect of the story is that the Odone's found a cure and saved their boy's life. The consulted, researched and pushed their brains and resources to the limit, and defeated the disease. They had no medical expertise, though they were well educated and modestly affluent. Mr. Odone was an economist working for the World Bank while Mrs. Odone raised the boy at their large and comfortable home. Yes, they had some advantages, and they made the most of them. Their accomplishment is nonetheless astonishing.

At the time the film was released, so says a postscript at the end of the film, Lorenzo had regained his hearing and sight, could move his fingers and toes a little, and was able to turn his neck. At they time they learned that the remedy was working and his fat levels were normal, Lorenzo could comprehend people speaking to him and answer "yes" or "no" by blinking his eyes. Since nearly everyone had given up hope that Lorenzo had any brain function left at all, it was nearly miraculous.

This is a great true story of amazing feats by determined people who kept positive attitude against all odds and not only met with personal success, but helped others by their actions. The Odone's accepted the problem and set about trying to resolve it. Such stories can reinforce our faith in humankind, and inspire others to be positive and determined. 


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