Lorenzo's Oil burns bright for ALD
by Jennifer Sweeney, Outpost Staff
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The degeneration of the nervous system is so severe that over time the patient suffers from loss of sight and hearing, the ability to walk and breakdown of brain functions. Eventually this fatal disease leaves the patient bedridden.
Presently there is no real treatment for ALD, aside from a bone marrow transplant, and funding for research is limited because of the rarity of the disease. Dr. Hugo Moser at the Kennedy Krieger Institute in Baltimore is at the forefront of American research.
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Compare Kevin's brain, left, to a healthy brain. The white portion indicates deterioration caused by ALD. MRI courtesy of Dr. Mindy Schwartz. |
His team is currently researching "Lorenzo's Oil," discovered by parents of an ALD child, Michaela and Augusto Odone. The Odone's found that a low fat diet in combination with the oil could normalize the VLCFA. The oil does not cure the disease, but aids in preventing its progression. Their continual research is called the Myelin Project. ALD has not beaten their son Lorenzo, who is now 18 years old.
Unfortunately for the Rantzes the treatment is very expensive. Blood work, lab tests and the oil would cost about $2,000 a year. Although the boys are eligible for Medicaid, the service will not cover the treatment because it is still considered experimental.
The Rantz' pediatric neurologist in Reno, Mindy Schwartz, explained that Brian is being considered as a candidate for a study of Lorenzo's Oil. "[The oil] is still being studied and hasn't been found to be a benefit," she said. Brian is a perfect candidate because he is asymptomatic and could help demonstrate the oil's ability to stop progression and reduce the severity of ALD. Kevin's ALD is too far progressed for the oil treatment to do much good.
"This disease isn't like cancer and so there's not a lot of funding for research," Schwartz said. She says it's understandable that insurance companies are reluctant to cover the high cost of the treatments. "You have a lot of non-medical people making judgments about what should and should not be covered." she said.
"We have no more money, so where do we go?" Young said of she and her husband Dick who have already taken out a second mortgage on their home to cover medical expenses. Young quit her job at last year to be a full time caretaker for Kevin. Dick, works at a Reno metal shop.
Right now the Young's are banking on the oil to prevent Brian's ALD from progressing. As far as Young can tell, it is the only thing that will save Brian's life. "We only hope that Brian might escape the end result," she said.
copyright 3/5/98 Nevada Outpost