Lorenzo Odone died last week, the day after his 30th birthday. If you haven't seen the movie based on his story, Lorenzo's Oil, I highly recommend it. Here is the synopsis from RottenTomatoes.com:
Based on a true 1985 story, "Lorenzo's Oil" chronicles a couple's search for a cure for their son's fatal disease. After diagnosing 5-year-old Lorenzo Odone's condition as an extremly rare degeneration of the nervous system known as Adrenoleukodystrophy (ALD), the doctors tell his parents that there is nothing that can be done, and that he has only two years to live. Refusing to accept the word of the medical establishment, the Odones begin researching ALD themselves. As her husband desperately seeks a cure, the boy's mother devotes herself to keeping her child alive with a single-minded fanaticism that alienates everyone around her, including, at times, her husband. Academy Award Nominations: 2, including Best (Original) Screenplay, Best Actress--Susan Sarandon.