LAWRENCE, Kan. -- Three times a day, Matthew Reimer drinks the oil.
"It doesn't have much of a flavor, but the texture isn't really that great," says 9-year-old Matthew.
It is Lorenzo's Oil, made famous in a movie by that name several decades ago. It is made from olive and rapeseed oils, and its purpose is to keep certain fatty acids from accumulating in the brain. That can happen in the genetic disease that Matthew has. It's Adrenoleukodystrophy or ALD. The accumulation can lead to brain damage and death.
The severe form of ALD happens only in boys. Matthew is still very active with no evidence of damage so far. The oil and a low-fat diet seem to be working.
"Each day, we're just thankful that we have him and he's healthy because we know how bad it can get," says his mother, Emily Reimer.
But the Reimers live with great uncertainty. Government funding for the ongoing study of Lorenzo's Oil has ended. Researchers in Maryland are trying to get the substance FDA approved or at least get the okay for its compassionate use.
"If we lose the study and it's not FDA-approved, we don't have Lorenzo's Oil anymore here in the United States," says Emily.
It's one reason why the Reimers and friends are holding a fundraiser in Lawrence this Saturday. For more information or to RSVP, go to www.curingmatt.org.
They'll have an auction of fine art from area artists, including Jeff Hanson, and some artists from the west coast. They'll also have the drawings of an up-and-coming young artist named Matthew.
"I just like to draw my own creatures that I create," he says.
Money raised will go to The Myelin Project, which supports the Lorenzo's Oil research and research of gene therapy which the Reimers say holds the greatest promise.
"So ultimately we'd like to find that cure," says Matthew's father, Troy Reimer.
The Reimers want the picture to be much brighter for Matthew and other boys with ALD.