Joshua James Gibson lost his battle to RDEB on November 2, 2010. He was 8 1/2 years old. You can view his tribute video here:
Then, just yesterday, Elizabeth (Elle) Cady Pop lost her brave battle against JEB-H due to complcation of the bone marrow transplant she received just 42 days prior. You can read her journey and leave a message for her family on their blog by click on the picture below:
"When someone you love becomes a memory, that memory becomes a treasure"