Moms of Children with Gianotti Crosti Syndrome

My son was diagnosed with Gianotti Crosti Syndrome in December 2011 at 9 months old after he was hospitalized twice in December. I have done a ton of research and seen too many doctors to count. One thing I have realized is that I have not been able to connect with even one other person who has ever had experience with this condition. So I am making it my mission to put myself out there for anyone and everyone who needs help with understanding this rare condition.