for 17 years i have watched my eldest daughter die at age 3 yrs 9 months and my daughter now who is 15 is not bloody well,14 people in the world have this GOLDBERG
AND SHPRINTZEN syndrome. for the first time ever i rang a support group and ye know what they told me. they couldnt help me.... coz its so rare they themselves hadnt heard of it..im not lying,look it up, now,what do i do? am i depressed coz i feel rock bottom.