In 2000, the year that the Salsbury's lost a third baby daughter to a rare disease affecting the brain, it was understood that the disease was a 'leukodystrophy', a category of genetic progressive disorders that affect the brain. But a specific diagnosis would not be made for several more years.

In 2001 and 2002, doctors identified the five genes responsible for what is now know as vanishing white matter disease. As soon as there is a biochemical or genetic marker for a disease, unusual cases may start to be analyzed, and the pioneers in this discovery were then able to work on unusual cases that had come to their attention in years gone by, including the Salsbury's girls.

Because the Salsbury's had donated their daughters' organs and brain tissue to research, doctors were able to analyze them even years later. For the Salsbury's personally, the diagnosis was one step further in the lifelong healing process. For medicine, they and their girls had contributed to a remarkable advance whereby genetic and prenatal testing for the genetic marker is now possible.

And more, the latest findings show that a protien that includes the gene, eIF2B, is not specific only to the brain, but plays a key role throughout the body in a process called 'translation'. The control of 'translation' is now thought to have implications for a much broader scope of health and diseases such as cancer and Alzheimer's.

We will be adding more information and resources about vanishing white matter disease and other pedicatric neurological disorders to the website. Please visit again soon.