A Mother's Journey
My heartfelt book, Losing Alex, which I wrote after the loss of my first baby, Alex, who was stillborn at full term, is now officially an AudioBook and I couldn't be more proud and humbled by the amazing voice of Marsha Waterbury, for lending her talents for my story.
Apparently the past 18 years I had my head completely in the sand. The cure for EB was in my cupboard! Who knew? Instead of putting fancy creams, or high tech bandaging and wound healing products, I should have just covered Nicky’s wounds with potato skins and cooked onions and...
I guess you can call this my first VLOG. I wanted to do this with Nicky but he’s not feeling well, so I just went on and did it myself. I sincerely hope it helps someone! Love & Light, Post Views: 3,148
I don’t take any perverse pleasure posting this picture, but I learned long ago that RDEB (Recessive Dystrophic Epidermolysis Bullosa) cannot be explained, it can only be shown. And even while posting this photo I cannot show how easily the skin peeled off, or how hard it was to re-wrap,...
If there was one thing I could say that has been the most frustrating in Nicky’s life with EB when he was younger was dealing with bandages. There was the issue of the cost, where to get them, insurance coverage, what to use, how to wrap, trial and error, the...
Hello everyone! Here’s video #2 (Video #1 is here) of our series “Ask Nicky”. My son Nicky was born with the Recessive Dystrophic form of Epidermolysis Bullosa. He is 18 now. In this video his brother Connor (11 years old, EB free) is here as well answering questions. If you...
Having a child diagnosed with something as bizarre and as rare as EB means living in a world that does not fit the reality of our world at large, even within the EB community. In my life I have struggled, worked hard, I’ve been poor and had bad luck, but...
This genetic stuff is confusing, I know! A lot of people do not understand it, they assume EB is an autoimmune condition or Nicky gets rashes etc, so I want to attempt at writing my own version of explaining EB in laymen’s terms. I am a fan of those Dummies...
A big thank you to those that sent their questions to Nicky! Here’s the video as promised. Connor said he feels left out, so please submit more questions for Nicky and some for Connor too for another video coming soon! Thank you so much for your kindness and for caring...
A quick post today-I made this graphic for my ebinfoworld.com website and Facebook page as part of a bunch of Memes I did one day earlier this month and this particular one is probably the best one I’ve made, which explains fully why Awareness for Epidermolysis Bullosa is so important....
I will be done with my book real soon, and then comes the hard part of selling it or self-publish it, we’ll see. However, in the new year, I want Nicky himself to be able to answer questions on a video I will make of him which I will then...
Yesterday was a particularly tough day for Nicky, and I don’t know if I am getting old or what, but I am still tired from it. We woke up at 5am, left by 6am, drove into Los Angeles during the morning rush hour (never a good thing) which made our...
Here’s the photos I promised yesterday when I updated Nicky’s CaringBridge Blog. Once again, I don’t post these lightly. I cringe a little. But there is truly no other way to show people what EB is. To understand EB. I want people to understand why Nicky is in so much pain....
Ten years ago a documentary aired that I am yet to show Nicky and not sure I ever will. I wasn’t even able to watch the whole thing in one sitting, I kept crying buckets and it took me three sittings to finish it. I guess you could say it hit...
This past year it seems as if giant leaps have been made for EB Awareness. As Julia Roberts would say: “HUGE”! I still can’t believe it. It’s happening. Not only Awareness is happening, a cure is closer than ever. I have to pinch myself! Last year, right around this time,...
