Just like all EB patients are different, so are the parents. All I ask is a little respect. I’ve taken care of Nicky’s every need since he was born. Please allow me the benefit of the doubt that I know what I am doing. I’m maxed out with advice. And although I respect you, I don’t need you to judge me or assume. I need you to support me and believe in me. I’m doing the best I can.    I never learned to look down on the poor, the disabled, the disadvantaged, the elderly, and I never will. I don’t judge people I don’t know because I don’t know their story. I don’t know their sacrifices, I don’t know their struggles. I know nothing. I don’t judge, period. The truth is that I learned over the years to always look for a silver lining and put things into perspective.Read More →

As mothers (and fathers!) we have children for many reasons, none of which include seeing our babies in pain for decades nor burying them. The death of a baby is a scarring event, make no mistake about it. The thing that haunts me the most is that it’s so final. There is no hope to be had, it’s over. Having lost a baby at birth, I can honestly say, from first-hand experience, that the grief is absolutely and completely heart-wrenching. It is horrible. I lived in a sea of tears for months after Alex was stillborn and ’til this day the topic is just too much for me. The truth is, I love my Nicky just the way he is, I just want the EB to disappear. If there was one thing I would like to make sure everyone knows is that every special need parent is indeed an EXPERTRead More →

Women are a swirl of emotions as it is and my husband often tells me how on earth we live longer knowing how conflicted we are inside all the time. We are. We are emotional bags and this sort of experience is like a tornado of emotions. Forget tornado, how about a category 5 hurricane? Genetics are hard to explain. Trying to make people understand how my son inherited the disorder when his parents do not have the condition is a challenge. The reason why Recessive Dystrophic EB has the world “recessive” in the name is because this is a recessive gene, a gene that lies dormant unless it’s paired with another recessive gene, so one of them has to decide to “show up”. I can only hope that by sharing this not so glamorous journey, the many doubted and neglected EB sufferers will gain medical recognition of their illnessRead 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. 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 →