Magazine article The Exceptional Parent

The High Price of Oil. Ancora Imparo: In His 87th Year, the Artist Michelangelo (1475-1564) Is Believed to Have Said, "Ancora Imparo"-"I Am Still Learning." Hence, the Name for My Monthly Observations and Comments

Magazine article The Exceptional Parent

The High Price of Oil. Ancora Imparo: In His 87th Year, the Artist Michelangelo (1475-1564) Is Believed to Have Said, "Ancora Imparo"-"I Am Still Learning." Hence, the Name for My Monthly Observations and Comments

Article excerpt

For almost 40 years this magazine has chronicled the daring, power, and fortitude of parents--parents who by their own admission were neither daring nor powerful but simply parents, parents who found themselves in situations and positions they never thought would be visited on them. These parents, these exceptional parents, had something in common; they were alone. They looked around the landscape and found little to help them. In fact, they found lots to confuse, confound, and cripple them.

And while the magazine has featured hundreds of parents who moved mountains, inspired others, and paved the way, one set of parents has become iconic in the special needs community.

Augusto and Michaela Odone qualify for a stamp of their own. Odone Parkway should be the name of the street leading to the doctor's parking lot of every major medical research facility in the country. For the first five years of his life, the Odone's son was a normal, healthy youngster. In 1984, the boy, Lorenzo, was diagnosed with adrenoleukodystrophy (ALD), a disorder occurring only in males, destroying the nervous system and leaving a wake of disabling conditions with no hope. Caused by a build up of fatty acids (long chain fatty acids in the blood), its victims become paralyzed, blind, and unable to speak. It remains one of the most sadistic diseases known, killing young boys in an agonizing display that renders bystanders helpless.

The Odones took matters into their own hands, rejecting the prevailing advice of physicians, parents support groups, and the neurological community. Serving as both a research team and advocacy team, they eventually found a promising treatment called "Lorenzo's Oil," and if it sounds like something from Hollywood, you would be right. Indeed, Lorenzo's Oil was an award-winning feature film (starring Nick Nolte, Susan Sarandon, and Peter Ustinov) made in 1992. The film has found its way into biochemistry classes and parent training programs. Film critic, Roger Ebert, (Chicago Sun Times) said, "It was impossible not to get swept up in it." James Berardinelli of ReelViews remarked, "It was about the war for knowledge and the victory of hope through perseverance." Knowledge and perseverance, the stock and trade of the exceptional parent and the underlying mission of this magazine. …

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