"There are so many individuals and groups who have worked toward this scientific breakthrough, and even more who made it possible for us to survive this ordeal as a family."

Each of three of our daughters, born in 1993, 1995, and 2000 went from normal healthy birth to a dramatic and unexplainable neurological deterioration, none of them living beyond the age of eight months.

Believing that the deaths of our baby girls were the only cases of this illness known to science, we donated their organs to medical researchers around the world and hoped that someone somewhere would find and answer or clue to what appeared to be an extremely rare disease of the brain known as leukodystrophy.

A series of purposeful and sometime serendipitous efforts, despite seemingly insurmountable medical challenges, did lead to the discovery of a rare disorder. And now the possibility that this discovery has far reaching implications for human health.

Decades of research, done in America, The Netherlands, and around the world; advances in imaging, genetics, and DNA testing; individual physicians and scientists who would not give up; and old fashioned coincidence that has not only unraveled this mystery, but could also help scientists understand more about even common diseases such as cancer and Alzheimer's, and may even lead to new ways to tackle them.

The mysterious disease that took the lives of our 'three little angels' now is defined by three extraordinary characteristics: First, the disease can now be tested for genetically, which means genetic risk can be identified; second, the disease has a name, childhood ataxia with central hypomyelination, or CACH, now known as vanishing white matter (VWM/CACH), which makes it possible to communicate more effectively about cases; and third, this discovery has implications for some of the very broadest categories of disease, meaning the identification of a rare genetic disorder may be the key to a much broader cure.

In sharing their our very personal story, we also hope that other families facing the challenge of a child's illness or death will seek out resources that bring healing and hope.

This is a golden age of discovery which is a hopeful time for patients. The pace of biomedical research is exploding and the potential for finding cures has never been greater. An ever expanding knowledge of the human body, human genetic makeup and the process of disease will translate into ways to diagnose, treat, prevent and cure disease of all kinds.

Michael and Gabriella Salsbury