When traditional medicine doesn’t hold the cure for disease, many people turn to alternative medicine. That’s what happened in 1984, when Augusto and Michaela Odone vehemently refused to accept the doctors’ prognosis that their young son would be dead within two years. They eventually turned to an alternative form of treatment.
Italian born Augusto Odone, an economist with the World Bank, lived in Washington, DC with his wife, Michaela, and their six-year-old son, Lorenzo. When Lorenzo was diagnosed with adrenoleukodystrophy (ALD), The Odones rejected the death sentence doctors gave their child. (1)
Rare Neurological Disease Attacks Only Young Boys
ALD is a rare neurological disease that attacks one out of 17,000 young boys between the ages of 5 and 10. The disease is genetically transmitted from the mother to the son. ALD allows a build-up of “long-chain” fatty acids within the brain that attack the sheathing that surrounds nerve cells. The accumulation of the fatty acids prevents the nerves from transmitting messages to the rest of the body. (2)
The devastation of nerve damage greatly impairs the patient, who gradually becomes deaf, mute, blind and eventually paralyzed. In 1984, most boys diagnosed with ALD lived between one to two years. Eventually, the child died either from aspiration (introduction of food, drink or fluid into the lungs) or neurological damage. (3)
Symptoms of ALD
According to the National Institute of Neurological Disorders and Stroke, ALD symptoms include (2):
–> Behavioral changes: Abnormal withdrawal or aggression
–> Difficulty swallowing
–> Disturbances of gait and coordination
–> Increased skin pigmentation
–> Intermittent vomiting
–> Learning disabilities
–> Poor memory
–> Poor school performance
–> Poorly articulated speech
–> Progressive dementia.
–> Visual loss
The Odones Search for a Cure
Immediately, the Odones educated themselves about their son’s disease and set out to find a cure. Augusto taught himself about medicine and science and with no formal training came to the conclusion that the right combination of olive oil and rapeseed oil would slow the progression of his son’s disease. He believed that this mixture of acids found in the two oils was in part a solution to Lorenzo’s illness.
Getting any medical professionals to take him seriously was impossible. In 1987, he met British Chemist Don Suddaby and convinced Suddaby to distill his formula that was later named Lorenzo’s Oil. (1)
Convinced he’d created a cure for his son’s illness, Odone needed a willing guinea pig. His wife’s sister agreed to try the oil. When it was certain that she’d had no side-effects, the Odones administered the oil to their son.
Three years had passed and Lorenzo’s illness had progressed. He was now deaf and blind. Nearly physically disabled, Lorenzo would blink or move his fingers to respond yes or no to questions. His parents employed five nurses to provide 24-hour care along with their assistance. Lorenzo’s motor functions were so impaired that his saliva had to constantly be suctioned. He was fed through a tube five times a day.
The oil treatment was Lorenzo’s last hope. Almost immediately after administering the oil, Lorenzo’s long-chain fatty acids dropped to normal. While the oil didn’t reverse the damage his body had already suffered, it did stop the progression of the disease. The little boy given only two years to live survived for 24 more years.
It wasn’t an easy survival, but his parents continued their loving care. His mother succumbed to lung cancer in 2000.
Lorenzo died in 2008, the day after his 30th birthday. On October 25, 2013, Augusto Odone (80) died. In the years that followed his patenting of Lorenzo’s Oil, Augusto retracted the claim that it was a cure since Lorenzo was never cured.
However, other boys in the early stages of ALD see an improvement and in many cases the disease doesn’t progress.
The Odones Dedication to Finding a Cure
In 1989, the Odones founded an organization (the Myelin Project) to support and promote ALD research. The organization also focuses on other disorders that attack the myelin sheath, such as Multiple Sclerosis (MS). (4)
The University of Stirling bestowed an honorary doctorate to Augusto Odone for his work on Lorenzo’s Oil. (4)
Lorenzo’s Oil, the Movie
In 1992, the story of the Odones’ struggle to save their son was made into a movie, Lorenzo’s Oil. Nick Nolte and Susan Sarandon starred as the parents of Lorenzo. The movie was nominated for two Academy Awards.
Current Prognosis for ALD Patients
As of 2010, “hundreds of ALD boys were helped through bone marrow and umbilical cord cell transplantations”. (5)
ALD screening tests for male newborns have been made mandatory in many states. As recently as July 2013, Connecticut’s governor signed the ALD newborn screening law, SB-465. (5)
It’s hopeful that the advancements being made in genetic therapies may one day provide a cure for boys suffering from ALD.