Hi, my name is Silvia, and I am a 53 year old mother of 3 boys, one in heaven and two on earth, ages 21 and 14.
My 21 year old suffers from a devastating and painful skin disorder called Epidermolysis Bullosa. He has one of the more devastating forms, called Recessive Dystrophic, so rare only 3 babies in a million are born with it. Furthermore, his subtype of EB, formerly known as Hallopeau Siemens, now renamed “severe generalized” is even more rare, and it’s listed as 1 in 2.3 million births.
More information about EB is in my links on the side, particularly the Facebook page EB Info World (please LIKE! ) and my website ebinfoworld.com.
My passion is writing, photography and graphic art, I go everywhere with my camera and my kids are my favorite subjects. In June 2013 I received a double degree in Graphic Design & Digital Photography which I completed while taking classes while my children were in school over the course of a few years.
I don’t have enough time to do all that I’d like to get done…ever! Just plugging along, raising my kids, blogging, facebooking, scrapping, photoshopping and trying not to fall too far behind on the laundry!!