I know this image will shock some who are unfamiliar with EB. I remember seeing Easton the first time. Actually, many times, over and over, the shock of a baby in such ravaged condition is something you dont get used to, you just know what youre going to see. A friend of mine commented on an earlier post that as a new mom, she was newly aware of the horror of this disease in a more personal way. Understand that holding your baby with EB is often impossible, as was the case with Easton for so long. I remember the vaseline everywhere, which provides a slick surface so as to minimize friction. Friction, rubbing, touch....all have the capacity to create blisters, wounds. If youre a parent, you can understand how that adds to the heartache of this disease. That the very thing we instinctively use to comfort and love our babies, touch, is the thing that can hurt him more. And every open wound is a potential entry point for infection. While we all harbor bacteria on our skin, for EB babies, it could kill them. Bleach is added to their bath water. EB parents just do the best they can do, everyday, as there is only to bandage the skin to protect it from blistering and infection, minimize activities which create or increase friction (this includes holding your baby; Easton would often cry when he was held, because it was painful and uncomfortable), and pray for a cure. This sweet local boy here underwent a bone marrow transplant in MN (the only place to do this for EB kids), and it is failing. He has had bleeding issues to the extreme. Hes been the recipient of over 300 blood transfusions. On top of every other toll exacted by this disease, now the only hope for a cure he has is failing him and causing him worse, life-threatening issues. He needs help. His mom needs a community behind her. She needs to get Jackson back to MN. Awareness and support are necessary for this little guy to survive. Please check out his support page and share or give as you are led. Help spread EB awareness. #stopEB #irefuseEB #causethewave
Posted on: Wed, 29 Oct 2014 17:58:38 +0000
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