My brother's eldest son, Luke, who is 6 and lives in Vancouver, Canada, was diagnosed with a congenital disorder a couple of months ago. He is literally one in a million as that is how likely it is to get this disorder. I won't go into the details - if you are interested, he has his own website and my brother, Kevin, has put an explanation of everything on there: http://lukechaplin.wordpress.com
I had such a great time on my visit to them in January, and even more so now in retrospect - as I got to know both my nephews as little boys and had a great time with the whole family without this hanging over us. If you want to see photos from that trip go here
There is no cure, and the only therapy that has been shown to have some success is a bone marrow transplant, so he is currently in the hospital to get that done...He is currently having chemo to destroy his bone marrow and the actual transplant takes place on the 17th. For those of you who pray, please keep him in yours!