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. There is no sugar-coating EB or trying to make it worse than it is, we couldn’t imagine a worse condition, ever. It’s treasuring the little things that inspires to greater things… and it is the little things that make life worth living. I have a child that loves me more than anything, he is kind, compassionate, polite and an inspiration to anyone that meets him. When that storm hits, grab that umbrella and be kind to yourself, because life goes on. Maturity is patience. It is the willingness to pass up immediate pleasure in favor of a long term gain. Unfortunately a morose and sad person isn’t much fun to hang out with, which creates a perpetual cycle. Love & Light, PostRead 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. The past cannot be changed, it can only be accepted. Real friends heal, they really do. If Nicky’s existence has taught me anything is not to judge situations I’ve never been in. The only thing I can do is be there for that person with an ear to listen and arms to hug. It’s hard to have hope when there seems to be no light at the end of the tunnel, knowing that even if a light might be in our peripheral vision, it could very well be an illusion. Miracles happen every day. Why not one for Nicky? Unconditional love sees past disability, fear, sadness and tragedy. Love is seeing rainbows when it pours, seeing the light in the darkness,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. 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 conditions that is indifferent to race or gender, equally present in all populations on earth. Just because a condition is rare, that does not mean that people don’t suffer from it. There are millions of people that suffer from rare diseases, mostly uninvestigated and incurable. Someone that never truly experienced overwhelming grief or horrible circumstances beyond their control, is ill equipped to grasp the concept of how much a little compassionRead 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 parent that wants to believe in miracles. As time went on, the difference between him and his peers only widened, and I started turning a blind eye to his peers. I could not compare, I wouldn’t. I refused to. I’ve even refused to compare him to other EB children, since the condition varies so greatly due to so many mutations causing the disorder. There is the perception that because I don’tRead 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. I don’t know a single EB mom who wouldn’t sell her soul to take their child’s pain away and would surely give up any strength, wisdom and courage gained through their journey to see that happen. Having a child with EB means having a house full of mass quantities of bandages and creams, all of which will only last a month. “Hang in there, things will get better”. When IRead 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 life has no value, that their life does not matter. Because it does. So many well-wishers often tell us they hope he’ll be OK soon. They truth is, RDEB is degenerative. It gets worse and worse with age. He won’t be OK soon or ever unless a cure is found. Copays have only one purpose: to place a financial disincentive in front of you before accessing healthcare. This is fine andRead 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 that feels these kids aren’t heroes, I don’t know who their heroes are… It goes without saying that if I had a dollar for every random treatment for EB people have tried to sell me I would be a very rich woman. I am a happy person in the grand scheme of things, and I appreciate all the good. I just wish my lessons hadn’t had to be learned in suchRead 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 had EB if they blistered. It’s like if Doctors bunched up together all conditions which feature rashes (eczema, psoriasis, rosacea or shingles) or conditions that feature the progressive deterioration of nerve cells (Tay-Sacks Disease, Parkinson’s & ALS). It’s extremely important to know that each form of EB is different in the way it’s inherited, in the way it manifests itself, in the way blisters appear, in the way the wounds areRead More →