The following links give you some background as to how XLP has affected different families around the world.
Jacob Martinez's story
For Jacob Martinez, blood and platelet transfusions are part of daily life. So is confinement to a tiny room sealed off from the contaminates of the outside world.
Joe Spitzzeri's story
Joe Spitzzeri, Jr. walks to the mound to throw out the first pitch Thursday before Kaneland's Western Sun Conference game against Sycamore. Spitzzeri is being treated for a rare genetic disorder.
Church appeal for sick Muslim boy
A church is appealing for mixed-race bone marrow donors on behalf of a young Muslim boy diagnosed with a rare and life-threatening genetic disorder.
Jordan DeBalli
Annual blood donation session to honor the memory of Jordan DeBalli
Students cheer sick classmate
WOODVILLE --Woodmore Elementary students are busy these days creating cards and videos to cheer their fellow classmate, Jerhid Fegley.
Cavan Hoey
Help little Cavan beat a rare blood condition
Dylan Lord
A bone marrow transplant couldn't save Tamara Lord's son Dylan. Now, his brother must battle the same rare genetic disorder