LAWRENCE — But for one life-saving difference, 8-year-old Matthew Reimer's after-school routine is similar to that of many boys his age.

Homework: 20 minutes today of reading “My Side of the Mountain.” Snack: low-fat cookies, milk and muffin. Later: an hour of swim team practice.

But in the middle of his routine, the third-grader will drink 15 milliliters of the 44 milliliters he takes every day of Lorenzo's oil — a substance made famous 20 years ago by the Nick Nolte and Susan Sarandon movie of the same name.

It also is the substance at the center of a new set of worries for the Reimers, who less than a year ago learned that Matthew, the youngest of their four children, has a rare and potentially deadly genetic disorder.

Now the family is coming to understand the vast difference between the hopeful endings of big-budget Hollywood films and government-budget reality.

In early December, the Reimers received a letter from physician Gerald Raymond, the director of neurogenetics at the Kennedy Krieger Institute in Baltimore — the one man in the United States who is allowed to distribute Lorenzo’s oil as part of a clinical trial. 

- Read the full story -

Read more here: http://www.mcclatchydc.com/2012/02/13/138684/program-supplying-lorenzos-oil.html#storylink=cpy