Is that really Segev? The boy who continues to defy the odds, struggling daily not to succumb to his myriad medical problems? Who is still acutely ill but on the mend, still having quite a lot of trouble breathing today?
Yes, yes it is.
Today I extrapolated some data from the Yahoo Ohtahara group project to consolidate geographical placement of children sick with this syndrome, like Segev: average life-span is 15 months.