Today's story is of an agonizing decision parents of a small child had to make. As you read this story, ask yourself what you would do in like circumstances.
Augusto and Michaela Odone had a beautiful six year old son Lorenzo, one who loved opera and Greek Mythology, and who was bright, curious and active.
But in 1984 while in a Washington, DC area kindergarten class, Lorenzo began falling down and began to have trouble hearing. His speech also became slurred.
After extensive medical testing, Augusto and Michaela received devastating news. Their little boy had ALD (adrenoleukodystrophy), a hereditary disease that would soon paralyze him, and in two to three years would take his life.
They appealed to doctors and researchers for solutions but were told it was hopeless. ALD, like Multiple Sclerosis, destroys the myelin sheath that protects nerve cells within the central nervous system, which controls body functions.
Augusto Odone
With ALD the body stops functioning and the patient dies.
But Augusto and Michaela refused to give-up. They devoured medical journals seeking answers and found research that claimed animals, like ALD sufferers that had abnormal levels of "very long chain" fatty acids, got relief from certain oils commonly used in cooking.
At their behest, in 1986 after extensive experimentation, a British biochemist created an edible blend of olive and rapeseed oils that might save 8 year old Lorenzo's life. Doctors ridiculed what to them was a nonsense, yet still offered no solutions of their own.
So the choice was this: Augusto and Michaela could try this experimental oil on Lorenzo or follow medical protocol and let their son die. They chose the oil.
Within three weeks of taking what became known as "Lorenzo's Oil," Lorenzo's very long chain fatty acids returned to normal.
But it did not offer the cure Augusto and Michaela had hoped for.
Lorenzo lived in a vegetative state. He could communicate by wiggling his fingers and moving his eyebrows, as he enjoyed being read to and listening to music. And in a sense, his parents still had the pleasure of his company.
Their story was so dramatic, that in 1992 it became a major movie starring Nick Nolte as Augusto and Susan Sarandon as Michaela, entitled "Lorenzo's Oil."
As for Lorenzo, he lived far beyond expectations, passing away at age 30 in 2008.
In 2000, Michaela died at the age of 61 and Augusto remained devoted to Lorenzo until Lorenzo's passing eight years later. In 2013, Augusto passed away at the age of 80.
Augusto and Michaela not only cared for Lorenzo, but had great compassion as well for others with ALD. In 1989 they founded the Myelin Project which seeks cures for ALD, Multiple Sclerosis and other related myelin destructive diseases.
