Whenever people have asked me whether or not I am a pessimist or an optimist I have always said that I am a pessimistic optimist. I see the glass as half empty but I hold-out hope that someone will come along and refill it for me.
When I eventually learned just how serious Lyme disease can be I panicked. And during the early days of Kathleen’s seizures I saw myself becoming a bit fatalistic. Luckily, however, I held-out hope that all of the problems could be fixed.
When Amy and I first started dating she was driving an old, beat-up Toyota station wagon. The thing really wasn’t pretty and not in good shape. It wouldn’t pass emissions and Amy had to get an emissions waiver, which our home state offered to people with older vehicles at the time since the emission laws were so new.
I was working as an automobile technician and I determined that all the car really needed to pass emissions was a carburetor overall. I removed and disassembled the carburetor, cleaned it and then rebuilt it with all new components from a carburetor kit that I purchased for all of around ten bucks. And voila! The car passed emissions with flying colors.
Amy considered me to be a magician since another mechanic told her that, since the car was so old and the engine so worn, given its high mileage, it would never pass emissions: and when I got it to pass she told me that she was convinced that I could fix anything. So, when Kathleen became ill, I dove into trying to “fix the problem.” But, unlike the issue with the carburetor on Amy’s old car, this was an entirely different beast.
For anyone who has seen the movie “Lorenzo’s Oil,” or who has been dealing with Lyme disease, you will be able to appreciate the task I had at hand. The problem was daunting, and there were days when I felt that I had much in common with Lorenzo’s dad, Augusto Odone.
In the movie, Odone is portrayed by Nick Nolte who, in my opinion delivered one of the finest performances of his career. Odone’s wife, Michaela, is portrayed by Susan Sarandon, who delivered an equally masterful performance. The movie’s theme centers on the Odone’s son, Lorenzo, who is afflicted with adrenoleukodystrophy (ALD), a disease that results in a build-up of fatty acids that eventually cause damage to the myelin sheaths of nerves.
Myelin sheaths are similar to the insulation that cover electrical wires and, if left untreated, the damage to the sheaths results in seizures, hyperactivity, problems with speaking, listening, and understanding verbal instructions. Essentially, ALD destroys the brain and a person’s ability to function properly — or function at all! If left untreated, cerebral ALD is characterized by progressive demyelination, which leads to a vegetative state and death.
Through their relentless quest to find a cure for their son, the Odones eventually connected with a researcher by the name of Dr. William B. Rizzo who, during his studies, discovered that the addition of oleic acid to cultured cells blocked accumulation of the factors which cause ALD. The Odones wondered if the oil might help their son, but scientists played down their hopes, pointing out that it would take years of work to produce and test the oil. However, the Odones never gave-up hope that the oil could be a possible curative treatment for Lorenzo. Michaela Odone set out to find someone who was willing and able to produce the same oil that Dr. Rizzo used in his cell studies and contacted over 100 firms around the world, ultimately finding an elderly British chemist by the name of Don Suddaby who was willing to take on the challenge.
When the Odones obtained a precious sample of the oil Suddaby produced, which contains two specific long chain fatty acids isolated from rapeseed oil and olive oil, they added it to their son’s diet and found that it normalized the accumulation of the fatty acids that caused Lorenzo’s steady decline. Unfortunately, however, the Odones learned that the oil was very, very slow to reverse their son’s symptoms because of the extent of neurological damage that had occurred. Realizing that their son’s condition would require additional treatments to repair the myelin sheaths, Augusto took on the new challenge of finding ways to heal myelin damage in patients.
Lorenzo was diagnosed with ALD at the age of five, but, by the age of 14, showed signs of improvement from all of the treatments that he received. Eventually, he regained his sight and his ability to swallow for himself, along with the ability to move his head from side-to-side. He also became able to answer “yes” or “no” questions by blinking.
The movie ends with scenes of ALD patients who were treated with Lorenzo’s Oil earlier in the course of their disease, sparing them the devastating neurological problems from which Lorenzo suffered.
Lorenzo died in 2008 at the age of thirty; and, in recognition of his work, his father, Augusto, received an honorary doctorate from the University of Stirling in Stirling Scotland. In 1989 the Odones founded the “Myelin Project,” which is an organization dedicated to promoting research into ALD and other disorders, such as multiple sclerosis, which destroy myelin sheaths. And until his death on October 24, 2013, at the age of 80, Augusto Odone continued to raise funds for the project.
The story of the Odones is a testament to the power of a parent’s love for their children, and the idea that we should never give-up hope, even when the odds feel as though they are stacked against us. Throughout the now six plus years that I have been working to help my own daughter, Kathleen, I frequently drew off the inspiration provided by the Odone’s unwavering efforts to find treatments for Lorenzo.
The morale to this story is that if you are person who, like me, is not a diehard optimist, you should never give-up hope. We are living during a time of astounding medical advancements; and a time when, thanks to modern technology, each and every one of us has the ability to easily access the research.
Wherever there is a will, there is a way; and we should always allow hope and our love for others to run eternal.