http://abcnews.go.com/Health/WellnessNews/rare-disease-rare/story?id=995...

Dianne Gray, who lost her 14-year-old son, Austin, to a rare disease, says fighting an unresearched illness can be an isolating experience for families, and she's trying to do her part to make it easier.
A N.C. couple lost one daughter to a rare disease and could soon lose another.

In honor of Sunday's second-annual Rare Disease Day, Gray is speaking out about her family's experience in the hopes it will draw attention to the challenges of rare diseases and help families in similar situations.

Gray can remember the moment she realized something was very wrong with her son, although it would take years before a specialist could tell her what it was.

"When Austin Gray was 3, he walked into the hallway one night and said, 'Mommy I can't see you,'" said Gray, who lives in Naples, Fla.