The movie Lorenzo's oil is the true story of how one family uses science to find a way to treat their son when he gets the debilitating disease adenoleukodystrophy (ALD). The research the doctors were doing was taking too long, so Lorenzo's parents identified the problem which caused the disease and tested their hypotheses about how the disease could be treated. Boys who get ALD now use the treatment that Lorenzo's parents invented.
If you were absent during the movie you can watch it for free on HULU
Here are a couple of obituaries of Lorenzo Odone who passed away the day after his 30th birthday... 22 years after the doctors predicted he would die.