https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Sat, 25 Apr 2026 12:20:10 +0000 https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed/page/2#post-434483 Thu, 06 Dec 2012 11:37:39 +0000 Rescuemom10 434483@https://boards.hellobee.com/ <p>I am STILL following Easton. Daily! I am so happy for him and his family that he is home! </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed/page/2#post-289922 Mon, 10 Sep 2012 16:11:48 +0000 jedeve 289922@https://boards.hellobee.com/ <p>I saw the picture on the news story. Tell your friends he is a beautiful, beautiful boy. Such a little angel face and a great head of hair. I'm sorry that they have to deal with so much for such a sweet boy. </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed/page/2#post-289897 Mon, 10 Sep 2012 15:58:57 +0000 Rescuemom10 289897@https://boards.hellobee.com/ <p>I have been following little Easton on FB...I saw the latest this morning and I am sending so many thoughts and prayers his way. Trying to hold back the tears as I feel so horrible for this poor sweet boy. </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed/page/2#post-280195 Mon, 03 Sep 2012 00:02:14 +0000 Rosie Girl 280195@https://boards.hellobee.com/ <p>Any more news? </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed/page/2#post-276228 Thu, 30 Aug 2012 13:25:00 +0000 LivsMama 276228@https://boards.hellobee.com/ <p>He is being airlifted to Cincinnati children's hospital, who have a specialty wing for EB patients. Unfortunately, he is being moved there because he took a turn for the worse. They think he might have blistering internally now, impacting his eating and breathing. They are still waiting on test results to see which form of EB he has, but its suspected to be junctional, which is the worst one. Im sick over this...my heart is just hurting </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed/page/2#post-275763 Thu, 30 Aug 2012 08:39:23 +0000 autumnlove 275763@https://boards.hellobee.com/ <p>So sad.. :-( I will keep that family in my thoughts! </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed/page/2#post-275758 Thu, 30 Aug 2012 08:35:21 +0000 mediagirl 275758@https://boards.hellobee.com/ <p>Oh my god that is so so sad. I'm sorry for your friends that they have to go through this with their baby. He is so precious and such a miracle and has no idea why he is in so much pain. Poor, poor baby. :-( </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed/page/2#post-275717 Thu, 30 Aug 2012 08:03:31 +0000 Mrs. Sunglasses 275717@https://boards.hellobee.com/ <p>I am heartbroken for the family and more so for that little boy. I can't even imagine the pain he's going through. :( I'll send prayers their way. </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed/page/2#post-275711 Thu, 30 Aug 2012 07:56:48 +0000 LivsMama 275711@https://boards.hellobee.com/ <p>@Rosie Girl: thanks. I know, the video KILLS me.</p> <p>Since Mr Bee ok'd this, here is the link. Again, the gallery will probably make you cry, but I want people to be aware of his story.</p> <p><a href="http://www.indiegogo.com/SAVEBABYEASTON?" rel="nofollow">http://www.indiegogo.com/SAVEBABYEASTON?</a> </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed/page/2#post-275590 Thu, 30 Aug 2012 03:20:18 +0000 Rosie Girl 275590@https://boards.hellobee.com/ <p>I just looked at the articles, and saw a video, and I am bawling at work right now. It made me so sick to my stomach to see him in so much pain. I will be praying for this family and precious little boy. </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed/page/2#post-275589 Thu, 30 Aug 2012 03:05:04 +0000 Rosie Girl 275589@https://boards.hellobee.com/ <p>I cannot even imagine. This just totally breaks my heart. There is nothing worse than an innocent child having these horrible things happen to them. I can't imgaine being the parents. It would kill me to see my child in pain like that. Prays to them all. </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed/page/2#post-275558 Wed, 29 Aug 2012 22:34:28 +0000 skibobrown 275558@https://boards.hellobee.com/ <p>This is so incredibly heartbreaking. My heart goes out to the parents. </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed/page/2#post-275550 Wed, 29 Aug 2012 22:19:26 +0000 pinkcupcake 275550@https://boards.hellobee.com/ <p>Completely, totally heartbroken. As a new mother, I can't even begin to fathom the pain that newborn baby must be going through. </p> <p>The world is so unfair. </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed/page/2#post-275463 Wed, 29 Aug 2012 20:48:24 +0000 Mrs. Yoyo 275463@https://boards.hellobee.com/ <p>So so sad. My heart aches for them :( </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed/page/2#post-275443 Wed, 29 Aug 2012 20:28:46 +0000 mrbee 275443@https://boards.hellobee.com/ <p>We don't have a policy on donation links yet, so feel free to post a link! </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed/page/2#post-275390 Wed, 29 Aug 2012 19:48:50 +0000 HLK208 275390@https://boards.hellobee.com/ <p>This is so incredibly sad. My prayers and thoughts are with that family. </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed/page/2#post-275381 Wed, 29 Aug 2012 19:42:01 +0000 LivsMama 275381@https://boards.hellobee.com/ <p>@Mrs. Jacks: unfortunately it's not. I can't even imagine. </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed/page/2#post-275318 Wed, 29 Aug 2012 18:50:31 +0000 Mrs. Jacks 275318@https://boards.hellobee.com/ <p>I was hoping that it was one of the less severe forms. I've taken care of these kids in the hospital and it's so heartbreaking.</p> <p>I'm wishing them the best. </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed/page/2#post-275315 Wed, 29 Aug 2012 18:50:08 +0000 LivsMama 275315@https://boards.hellobee.com/ <p>@Coco Bee: that means EVERYTHING. Thank you so much! And please, please thank your friends for me. It means the world to their friends and family that so, so many people are behind them. They are overwhelmed by all of the support. </p> <p>And THANK YOU to everyone on the boards here. The amount of compassion and support here is just amazing </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed/page/2#post-275310 Wed, 29 Aug 2012 18:46:35 +0000 Mrs. Pen 275310@https://boards.hellobee.com/ <p>@LivsMama: I know it's not much... but I shared on facebook, and two of my friends have already shared it, and one donated.</p> <p>I hope this spreads quickly. </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed#post-275110 Wed, 29 Aug 2012 16:28:10 +0000 Sweet T 275110@https://boards.hellobee.com/ <p>This is so heartbreaking! I can't even imagine what your friends are going through. I think I read the same blog others have mentioned and her baby boy was given a similar prognosis. He had Junctional EB. Although he did pass away, he lived to be almost 3 and surprised his doctors. I hope baby Easton can defy the odds too! Praying for him and the rest of his family! </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed#post-275077 Wed, 29 Aug 2012 15:57:37 +0000 Mrs. Pen 275077@https://boards.hellobee.com/ <p>I clicked on the link you put up on Mrs. Blues wall without reading about the pictures... I died inside seeing this precious little boy. I am sitting here bawling because my heart is breaking for him and his family. I have a son and I could not imagine seeing my baby in pain and not being able to do anything about it. I cannot express my sympathies for this family.</p> <p>I am truly praying that God works a miracle of epic proportions- that he bestows grace upon this fragile little soul.. </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed#post-275012 Wed, 29 Aug 2012 15:18:37 +0000 cyndistar3 275012@https://boards.hellobee.com/ <p>That is so heartbreaking... They are all in my prayers! I don't know how much it will help but I shared it on my Facebook as well. </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed#post-274970 Wed, 29 Aug 2012 14:42:22 +0000 Mr. Coco Bee 274970@https://boards.hellobee.com/ <p>This breaks my heart and brings tears to my eyes. I cannot imagine how awful it must be for the child, and for the parents.<br /> Easton and his family will definately be in my prayers!<br /> I hope there is some way to ease his pain and heal that poor child, and that he will live much longer, and have a full life. </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed#post-274959 Wed, 29 Aug 2012 14:34:27 +0000 chrispygal 274959@https://boards.hellobee.com/ <p>Oh this breaks my heart. Poor little Easton. I'm sending them lots of love and prayers. </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed#post-274954 Wed, 29 Aug 2012 14:27:03 +0000 spaniellove 274954@https://boards.hellobee.com/ <p>What an ordeal for your friends to go through, and I am hoping as hard as I can that they can make little Easton comfortable. </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed#post-274916 Wed, 29 Aug 2012 14:08:52 +0000 MsMini 274916@https://boards.hellobee.com/ <p>@LivsMama: Thank you. A lot of people say that, but working in NICU is incredibly rewarding, I feel privileged to have families entrust me with the care of their most precious members. </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed#post-274859 Wed, 29 Aug 2012 13:51:45 +0000 Rescuemom10 274859@https://boards.hellobee.com/ <p>My heart aches for your friends. I am in tears. Poor sweet baby. My thoughts and prayers are with them. </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed#post-274816 Wed, 29 Aug 2012 13:38:38 +0000 LivsMama 274816@https://boards.hellobee.com/ <p>@MsMini: I have so much respect for what you do. I cant imagine working in the NICU. I dont think I would be strong enough </p> https://boards.hellobee.com/topic/epidermolysis-bullosa-prayers-needed#post-274707 Wed, 29 Aug 2012 12:58:44 +0000 dagret 274707@https://boards.hellobee.com/ <p>This is so sad. They're in my thoughts and prayers. That poor baby. </p>