i only logged onto  this web site last night only just got the computer,  i was so sorry to here that  there had  been deaths of children with cah,  there are only a handful of  children were i live with the condition , and i only see them when we have a cah meeting , my daugter is 12 yrs old and we have been to 4   meetings in her life time, i dont get the chance to speak  to other families, and somtimes feel quite alone . sarah   has had 4 adreanal crisis since she was a baby ,and they have been very scary, are endo does not even belive in having the emergency injection of hydrocortisoneat home, which i think would give me a bit more confidence,  when she is ill.so you see im just as scared as you!