Sam
In 2013, our then 2-year-old son fell off our bed and was no longer able to stand up. Within 6 weeks he was diagnosed with vanishing white matter disease (VWM), a genetic neurological condition that destroys myelin, the brain’s white matter. In doing so, it permanently affects transmission of brain signals to the rest of the body.

VWM primarily affects children and is untreatable, incurable, and terminal. Children generally only live between 5-10 years after diagnosis. It is also incredibly rare, with only 170 known living cases worldwide, meaning that little funding is available for research.

Since his diagnosis, Sam has lost the ability to walk, stand, or even crawl, hopping on his knees to get around. His arms shake, making writing or drawing nearly impossible, and his speech is slow. Despite all this, Sam is the happiest child you will ever meet. He is filled with love, joy, and gratitude, and we feel so fortunate to have him in our lives, even if only for a short time.

~Allyson, Sam’s Mom

Vanishing White Matter
Leukoencephalopathy with vanishing white matter is a progressive disorder that mainly affects the brain and spinal cord. This disorder causes deterioration of the central nervous system's white matter, which consists of nerve fibers covered by myelin. Myelin is the fatty substance that insulates and protects nerves.

In most cases, people with leukoencephalopathy with vanishing white matter show no signs or symptoms of the disorder at birth. Affected children may have slightly delayed development of motor skills such as crawling or walking. During early childhood, most affected individuals begin to develop motor symptoms, including abnormal muscle stiffness and difficulty with coordinating movements. There may also be some deterioration of mental functioning, but this is not usually as pronounced as the motor symptoms. Some affected females may have abnormal development of the ovaries. Specific changes in the brain as seen using magnetic resonance imaging are characteristic of leukoencephalopathy with vanishing white matter and may be visible before the onset of symptoms.

Artist: Lucas Kolasa