I just wanted to drop a little note to thank all of you who participated in the prayer for Daylon's kidneys tonight at 8pm. I really felt the Spirit and was comforted by the idea of so many people communing with God from all over the world for our little guy. I know I say it a lot, but I'll say it again: I am thankful for your prayers. I am thankful for your support. I am thankful for your comments. I am thankful for you. You inspire me and give me strength. We've been told several times, "I don't know how you do it" and I know exactly how we do it...we have a strong belief in God and an amazing support team that pushes us everyday to keep going, to keep a stiff upper lip and trudge through the mess of it all. On those days when life seems too much handle, your words of encouragement and support helps us to see the sunshine on a cloudy day. I believe in God and I believe in prayer. I know we've been heard and now we listen for our answer. Sweet dreams.
We're Brian and Jennifer Edling and we have 5 beautiful kids: Keira,8; Caleb,6; Violet and Sadie, 5; and Daylon who turned 3 in July. Daylon was born with a rare disease called Epidermolysis Bullosa. His specific form of EB is Junctional Herlitz. When contact is made with his skin, it blisters and peels or sometimes rips right off. Unfortunately, his form of EB also affects his soft tissues (organs, throat, mouth, eyes etc.) giving most kids with his condition less than one year to live. Thanks to modern technology, there's a new clinical trial Bone Marrow Transplant at the University of Minnesota for severe forms of EB. On June 24, 2010 Daylon became their first JEB patient to undergo transplant. We're all so excited at the prospect of Daylon's improved life! This is the story of our sweet baby Daylon, and life with EB.