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.
Cancer survivor's surprise is 'beyond belief'
INDEPENDENCE - Earning a black belt in taekwondo didn't make Adam Steele a warrior.
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.
The story of Tyler Fisher
Matthew & Troy Mitham
The story of Matthew & Troy Mitham
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.
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.
Help little Cavan beat a rare blood condition
A bone marrow transplant couldn't save Tamara Lord's son Dylan. Now, his brother must battle the same rare genetic disorder
The story of Cameron Twitty
The Brodie Family
A family's faith and fortitude with community's help, Drew Brodie recovers
The brave story of this family from the UK
David N Rodgerson from Canada outlining his family’s XLP story
The Hinton Family
A little boy's major miracle
Maria Luisa Rodríguez
The story of Maria Luisa Rodriguez from Spain (English and Spanish)
The story of 15-year-old Johnathan McIntyre and his family's experience of XLP
The LaRue family
The story of the LaRue family from the USA
The Hartley boys
The story of the founders of the XLP Research Trust from the UK