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. We all have bad days. I want to be able to vent my grief and frustrations without anyone making me feel guilty about them. I just want people to accept the fact that caregivers have feelings too and all we want is acceptance and understanding. EB is one of those conditionsRead More →

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. Believe me when I tell you, never in a million years I could possibly exaggerate Nicky’s condition. 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 parentRead More →

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. But in this lifetime, my purpose is my son. My purpose is to raise awareness for this awful thing we live with every day. “How are you still smiling?” he asked me. I admit I didn’t know how to answer. “Because I don’t want to cry” is what I told him.Read More →

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. Never bad mouth the mother or father of your children to them. Never use your children against their other parent. NEVER! Be the first to say you’re sorry. Laugh until you cry and Love with all your heart. When you see someone suffering, don’t think for a minute that their lifeRead More →

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. EB is one of those conditions that needs to be SEEN to be understood. I wanted to be known for what I LOVED, not for what I hated. I suppose in this life we need to recognize who cares about us and make sure to spend time with them. Anyone thatRead More →

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. It’s also very important to note that EB is just an umbrella word. A word that throws together all blistering conditions no matter how they are inherited or how they manifest themselves. Back in the late 1800s/early 1900s, when the words Epidermolysis Bullosa first appeared, the Doctors told patients they hadRead More →

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. Time and patience have brought me a long way. I have a sense of peace about things that is hard to explain sometimes. I try my best to own the pain so it does not own me. I kept my personal bankruptcy, which resulted from our insurance company refusing to payRead More →

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. Nicky loves and cherishes his hands, and wrapping them is as important to wrap for us as any other part of his body. It’s just incomprehensible to me how this horrid disorder exists and it completely changes our view of life in ways we never knew we needed to know norRead More →