{"id":2272,"date":"2016-10-18T09:18:40","date_gmt":"2016-10-18T16:18:40","guid":{"rendered":"http:\/\/blog.silviaskingdom.com\/?p=2272"},"modified":"2017-01-20T06:53:04","modified_gmt":"2017-01-20T14:53:04","slug":"blog-quotes-part-9","status":"publish","type":"post","link":"https:\/\/blog.silviaskingdom.com\/?p=2272","title":{"rendered":"Blog Quotes Part 9"},"content":{"rendered":"

Feel free to save them and share! To save the bigger version of the image, click on the image first to load it, then right click to save image.<\/p>\n

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Believe me when I tell you, never in a million years I could possibly exaggerate Nicky’s condition.<\/p>\n

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I became the parent who hopes against hope despite a horrible diagnosis, the parent who jumps out of bed the moment the child calls you even if you were in deep sleep, the parent that wants to believe in miracles.<\/p>\n

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As time went on, the difference between him and his peers only widened, and I started turning a blind eye to his peers. I could not compare, I wouldn’t. I refused to. I’ve even refused to compare him to other EB children, since the condition varies so greatly due to so many mutations causing the disorder.<\/p>\n

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There is the perception that because I don’t have a job or I’m not in school, that I’m sitting around doing nothing, which is ridiculous.<\/p>\n

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It’s my hope that by sharing my experiences I may be able to help others who have similar struggles and be their voice.<\/p>\n

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There are so many subtypes and subforms of EB that to bunch them all up in one neat little package or treat every patient equally is a great disservice to each and everyone of them.<\/p>\n

Love & Light,<\/p>\n

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