Coping with Childhood Ilness
Thirty years ago, Augusto Odone's son, Lorenzo, was diagnosed with adrenoleukodystrophy (ALD). It was then a little-known disease, and the diagnosis came with advice for families to simply try to make their child's last days as comfortable as possible.
It wasn't advice that Augusto Odone was prepared to accept. Instead, Odone – an economist by trade – retired from his job with the World Bank and began to research and study. He taught himself enough science to begin experimenting with cures. Within three years of Lorenzo's diagnosis, Augusto had developed a mixture of cooking oils that successfully slowed the effects of the disease. The young boy, formerly not expected to live past 10, made it to see 30, thanks to his father's creation, simply titled "Lorenzo's oil."
Augusto Odone made history when he took to his amateur lab to cope with his son's illness, and so inspiring was his story that it was made into the 1992 movie Lorenzo's Oil, starring Nick Nolte, Susan Sarandon and Peter Ustinov.
In memory of Augusto Odone , who died this week, and his son Lorenzo, who died in 2008, we are sharing their story, along with other ways that families have approached coping with a child's devastating diagnosis. With diseases ranging from ALD to cancer to progeria and other severe illnesses, these children have the odds stacked against them. But their strength and determination, as well as that of their parents and siblings, bring hope. We wish for a miracle cure for each and every one of them.