Lorenzo's Oil

"Lorenzo's Oil is based on the true story of Augusto Odone (Nick Nolte) and his wife, Michaela (Susan Sarandon), as they fight to save the life and sanity of their son, Lorenzo (Zack O'Malley Greenburg). Lorenzo, diagnosed in early 1984 as a victim of ALD, an incurable degeneration of the brain, is beyond the help of conventional medicine. His parents, unwilling to give up the struggle even after participating in several failed therapies, begin their own investigation of the disease. Lorenzo's Oil follows the triumphs and tragedies of this search." 135 minutes

From Janet Maslin's NY Times review of Lorenzo's Oil
"Lorenzo's Oil" is the tough-minded, completely gripping story of Augusto and Michaela Odone, parents who responded magnificently after receiving the worst conceivable news about their child. At 5, Lorenzo Odone began exhibiting symptoms of what would soon be diagnosed as adrenoleukodystrophy, a rare and invariably fatal disease. The Odones were essentially told that the best they could do would be to make Lorenzo's last days comfortable. They were told that he would die within two years."

Postscript: Sadly, Lorenzo died in May of 2008. Obituary