there was a kid like that on youtube and he used to post up mad videos of his room and favorite songs and shit kids used to rip him apart was pretty shitty. then he died at like 16 which was like 13 years longer than he was expected to live. pretty shitty, also pretty rare.
damn...that family has already lost 3 to that disease? i can't even imagine how hopeless the parents and kids both feel, just knowing that it's a matter of time, barring some sort of miracle.
This is like when i was a kid and when asked what i wanted for christmas I said world peace so that my parents would think i was cute and spend more on me.