The boy in the above picture is Henry, but friends call him Hank.
In November 2007 he was diagnosed with Cystinosis, a rare genetic disease that affects approximately 500 people in the United States (mostly children), and about 2,000 people worldwide. This disease causes the amino acid “cystine” to accumulate in the body’s cells. Over time, cystine buildup slowly destroys various organs including the kidneys, liver, muscles, white blood cells, eyes and central nervous system.
Because Cystinosis is such a rare disease that affects such a small population, research money is scarce to nonexistent. Termed an "orphan disease", Cystinosis has not been adopted by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat it or prevent it.
Yet research on complicated diseases like Cystinosis often lead to advancements in other rare diseases. In 2008 Hank's parents attended a fundraiser in California to raise money for research, and after talking to physicians and researchers are very hopeful a cure will be found some day soon.