Alex has a very simple wish. The 8-year-old wants to run with his friends on the playground. But because of a rare disease, he can’t play in the sunlight for very long. Alex has X-linked reticulate pigmentary disorder with systematic manifestations or what’s more commonly called XLPDR. It’s so rare that there are only eleven diagnosed cases worldwide.
http://edition.cnn.com/2016/03/20/health/cnnphotos-alex-xlpdr-rare-disease/index.html
