Hello all. A friend of mine's wife recently gave birth to their 4th little boy. Her pregnancy was normal and smooth, but as soon as little Easton came out, they knew something was urgently wrong. He was born without skin on most of his arms and legs, and was in such horrific pain that he was screaming and violently shaking. He has been on constant morphine and tylenol since then to manage the pain-pain that they compare to your body being covered in third degree burns, as that is essentially what it is. He was born with a rare and unfortunately incurable skin condition called Epidermolysis Bullosa, where any pressure, friction, heat, or touch to the skin causes bad blistering and loss of skin. They cannot even hold him without him being on a vaseline covered blanket, and he has to be wrapped tightly almost completely from neck to toe in vaseline covered bandages daily. He has a feeding tube, and his mommy has to pump rather than nurse him, as the blisters will also form in his mouth and esophagus. She did get to nurse him once, but blisters formed immediately so she can't anymore. Its just heartbreaking. They have a website up about him, but it has a donation link so I dont want to post it and seem like I am seeking donations-Im absolutely not. I also dont know if it violate the terms of HB. What I want to do is spread the word to see if we can raise some awareness for this disease and this precious little boy. We've sent his story to several news outlets as well as Ellen, etc. I guess Im just asking for prayers for this sweet little boy and his family. My heart is shattered for the pain that they are going through.

If anyone wants the link, let me know and I can post it to your wall. Or if Mr or Mrs Bee see this and think its ok to post, let me know.

Unfortunately, most babies with this disease, particularly with the severity of his (the doctors say its the worst case they have ever seen,) dont live past 12 months....

xo

ETA: Here is a link to a local news story about baby Easton. It links to thewebsite I was talking about. Im going to warn you - the photos are difficult to see.

http://www.9wsyr.com/news/local/story/Family-friends-rally-for-CNY-baby-born-with-rare/mZBmH7O8SU-pG1oCuyCPjA.cspx