{"id":862,"date":"2014-04-22T20:42:22","date_gmt":"2014-04-22T20:42:22","guid":{"rendered":"http:\/\/blog.silviaskingdom.com\/?p=862"},"modified":"2014-04-22T20:43:58","modified_gmt":"2014-04-22T20:43:58","slug":"eb-awareness","status":"publish","type":"post","link":"https:\/\/blog.silviaskingdom.com\/?p=862","title":{"rendered":"EB Awareness"},"content":{"rendered":"
\"Jodi<\/a>

Jodi with Nicky & Connor under the display<\/p><\/div>\n

It always humbles me when anyone is inspired, cares, and takes a special interest about the devastating condition my son was born with, Recessive Dystrophic Epidermolysis Bullosa. For so many years we felt so abandoned. Nicky always thought nobody cared. I’ve always tried to change that and for so many years I tried my best to make this little known disorder known, but many things in our lives we cannot do alone. We needed help.<\/p>\n

Jodi Champagne was the first person that wanted to make a difference for us. I met her while taking a class at the local College. She came in to speak to us and I felt a special connection immediately. It wasn’t until a while later, when she saw photos of Nicky’s wounds I posted on my blog here (Here’s one post titled ‘Under The Bandages<\/a>‘ and another one of simply ‘Wound Pics<\/a>‘) that she decided she wanted to do a photographic documentary.
\nAfter taking pictures for nearly two years, the book was released in late 2013. You can get the Book exclusively at BLURB\u00a0http:\/\/www.blurb.com\/b\/5024440-courage-under-wraps<\/a>\u00a0and on iTunes!\u00a0https:\/\/itunes.apple.com\/us\/book\/courage-under-wraps\/id803462653?mt=11<\/a>.<\/p>\n

Hoping to get the word out about the book was hard as well. It wasn’t until a wonderful reporter, Gina Silvia from the local FOX11 News saw my plea for awareness on twitter that she decided to interview us. I will be forever grateful. THANK YOU GINA!!! <3<\/p>\n