{"id":1018,"date":"2014-08-31T18:31:58","date_gmt":"2014-08-31T18:31:58","guid":{"rendered":"http:\/\/blog.silviaskingdom.com\/?p=1018"},"modified":"2014-08-31T18:31:58","modified_gmt":"2014-08-31T18:31:58","slug":"butterfly-child","status":"publish","type":"post","link":"https:\/\/blog.silviaskingdom.com\/?p=1018","title":{"rendered":"Butterfly Child"},"content":{"rendered":"

\"butterfly_child_cover-copysmall2\"<\/a>As some of you know, I am writing a book about my son’s life with EB. I subtitled it ‘A Mother’s Story’ because while I try to stay true to Nicky’s feelings and trials, it’s a tale from my prospective, a mother’s prospective, and what I learned during this 18 year journey with my son.<\/p>\n

I am still working on the book, and it will most likely be done by the time Nicky turns 18 in late November. At that point I will be shopping around for a publisher. I am hoping it can be available sometime in early 2015 at the latest, depending on the publisher, of course. I will keep everyone posted.<\/p>\n

In the meantime, my simple request is to please go and like the Facebook Page<\/a> I made for the book now. It includes excerpts from the book and various photos of Nicky when he was little.\u00a0I truly appreciate everyone’s support and if you can,\u00a0please share this page with your friends! The more support I gather, the more eager a well known publisher will be willing to take this project seriously and give it the attention it deserves.<\/p>\n

Why a book, you may ask? For many reasons. Besides the given of awareness and to perhaps share my journey to help others in a similar situation, perhaps this book will serve as a story of life in America with an orphan condition. I am certain other rare conditions encounter similar challenges, whose story is seldom written about. From Insurance Companies refusal to cover the most basic needs for any EB patient, to the devastation I felt when Nicky was diagnosed with an incurable, rare and always-fatal skin disorder, knowing that at the time of Nicky\u2019s birth there was no research for a cure at all. In the months and years that passed I\u00a0had to learn to enjoy each moment, find happiness in the midst of sorrow and try everything I\u00a0could to keep him alive, often with very few resources, little to no help and even less information available.<\/p>\n

Thank You for your support,<\/p>\n

Love & Light,<\/p>\n

\"Animation364_silvia\"<\/a><\/p>\n

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