March 17, 2015
Blog
March 12, 2015
Bandages I use for Nicky
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: 2,415
March 11, 2015
New Book Trailer for “Butterfly Child”
A little update on the book… I am still waiting for a few replies from literary agents… not sure I want to wait much longer. I initiated the process with Lulu, so I am formatting the book to their standards as we speak. I wish I knew someone famous that...
March 9, 2015
This is RDEB
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,...
March 1, 2015
Living with Epidermolysis Bullosa
Several years ago I compiled several stories from families dealing with EB and I made a book out of it. The result was amazing. Since I will never feel like I did enough to market this book the other day I decided to make a “Book Trailer” out of it to...
February 24, 2015
Bandages, Smandages
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...
February 19, 2015
Ask Nicky (and Connor!) video!
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...
February 13, 2015
Different Realities
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...
February 7, 2015
Book Trailer for my book “Losing Alex”
Here’s my book trailer for “Losing Alex: The Night I Held An Angel“. Dedicated to all moms of Angels <3 Love & Light, Post Views: 2,285
February 5, 2015
Dumbing Down EB
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...
January 21, 2015
Almost there…
As of yesterday, my book Butterfly Child is officially done. I cried a thousand tears writing this memoir, which encompasses the past 20 years of my life. As of right now I am doing a final re-read, going through every page with a fine tooth-comb, making sure the grammar is...
January 14, 2015
Ask Nicky Video!
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...
January 12, 2015
Encounters
A few years ago I had a brief encounter with a little girl that I am still thinking about. I was at Children Hospital Los Angeles with my boys; Nicky had an appointment with the endocrinologist (I think?) and on our way out a couple was behind us with this...