September 20th was the magical day that the book ‘Courage Under Wraps’ by Jodi Champagne was displayed at a Gallery in Hollywood along with many other photographers’ works. This is the Photographic Documentary Book about the life of my son with Epidermolysis Bullosa. Here are some photos from the event. The book is available from Blurb as a print and also as a PDF and as an ebook for the iPad. The book is 142 pages and it has hundreds of photos of Nicky suffering and living with EB, from bandage changes to trips to the Doctors, hydrotherapy and iron infusions. Part of the proceedings from the book go to the EBMRF (Epidermolysis Bullosa Medical Research Foundation) http://www.ebkids.org/ Jodi is working on getting it available for the Kindle and Nook, but it’s quite tricky and I am not sure how long it will be before that is going to happen.Read More →

As some of you may know, I’ve been a rather active advocate for EB, or, rather, Epidermolysis Bullosa, my son’s skin disorder, since he was born. I am in the process of writing my book, Butterfly Child, which is the story of my son’s life with EB and I am also using my writing as self therapy. In an essence, I am writing to put his life and his care into prospective, what have I learned? What is the purpose of all of this? What was the toughest lesson and the biggest ha-ha moment? The book will be out in late 2014, but in the meantime, I was interviewed by It Matters Radio to raise EB Awareness, my interview is about half-way in the show, click below to listen… New Entertainment Internet Radio with It Matters Radio on BlogTalkRadio Another way I am trying to spread awareness as of lateRead More →

Hello friends, family and everyone interested in seeing how Nicky’s left hand surgery went! I finally have time to do this blog post… Here Goes! This photo below is a photo of his hand BEFORE surgery. It shows quite clearly his four fingers and the ‘pinky’ is all, as we say, “webbed in”. Here’s the hand POST surgery, he has a pinky now! Yey!!! The reason why Nicky wanted his pinky ‘fished out’ was not because he needed it for anything, but the problem with it being webbed inside the hand was that it made it impossible for him to move his wrist much without a considerable amount of pain. OK, now, on to his thumb: Below is a picture of his thumb BEFORE surgery. His thumb was very much ‘in’ the palm, preventing him to use his hand to pick up things or play video-games well, which is his motivation forRead More →

Well, it’s official!! “Courage Under Wraps” is now a reality. This is the photographic documentary that depicts my son Nicky’s life with Epidermolysis Bullosa, aimed at raising EB Awareness. It’s available in print and as an ebook. Part of the proceedings are donated to the EBMRF for a cure. While the book is already available online, there will be a “Book Release Event” on September 20th, 2013 in Los Angeles to which anyone is welcome to come. It will take place at the Julia Dean Gallery at 7555 Seward Street at 7pm. My son and I will be there. This particular book is a Photo Documentary by my friend photographer Jodi Champagne of what Nicky’s life is like, from the moment he wakes up in the morning to the moment he goes to bed at night. There are many photos in there of bandage changes, trips to the Doctor, holidays, pain and suffering and siblingRead More →

There seem to be a little confusion on what books are being made right now about Nicky, so I am here to clear things up a bit. Nicky is, of course, my son. He was diagnosed at birth with Epidermolysis Bullosa, the Recessive Dystrophic form. As devastating as this diagnose was at the time, it’s hard to explain in a few words what it means to raise a child in constant pain, whose condition is considered terminal, a condition whose the medical community is oblivious about and whose insurance companies discriminated against from the very beginning. When Nicky was born 16 years ago, I felt helpless and hopeless. I was told Nicky would never see his first birthday. Considering we had to bury our firstborn a mere 18 months earlier, I am not sure I can convey the heartache our family endured. After all these years, I feel that notRead More →

I just wanted to make a quick post about Nicky’s left hand and show a couple of pictures.             This is Nicky’s left hand. This particular photo shows quite clearly his four fingers and the ‘pinky’ is all, as we say, “webbed in”. The index, middle and ring finger are a bit curled, but they function well and he wants nothing done to them, they’ve been holding pretty much this position since the last surgery in 2002 thanks to the wrapping.   This second photo to the left shows his thumb, which is very ‘in’ the palm, preventing him to use his hand to pick up things or play videogames well, which is his motivation for doing the surgery to begin with. Believe me when I tell you, this is HIS decision and not mine. I don’t particularly enjoy seeing him in more pain, butRead More →

OK, so this blog is a lot longer than I intended to… but how do you sum  up the time of your life? This is a trip we’ll never forget. Thanks to everyone that made it possible! As many may imagine, Nicky’s life is full of pain. Medications to alleviate pain, to soothe the skin, to help bowel movements and to relieve itching are only a part of the puzzle. There are the nightly bandage changes, the difficulties of walking due to his wounded feet, and the nightly g-tube feedings. Everything is difficult. Everything is a challenge. Then, of course, there is school, Doctor’s appointments, Iron infusions, trips to CHLA… and the list goes on. How do you give a child in this much pain some joy? We had used our ‘Make-A-Wish’ 11 years ago when Nicky started kindergarten (which I talked about in my last blog), so I neverRead More →

I had a great friend yesterday ask me if I could write a blog about how people should handle things when they see a child that is disabled. Different. What do they say to the parent? Anything? Should they avoid the child or engage? What’s the appropriate thing to do? I must say, I had to think about this one. Truth be told, being a special need mom can be isolating, lonely.  No one knows what to say to me.  I feel a distance, a disconnect from just about everyone because I know that they don’t know what this feels like and they just can’t relate. I have family members who have not spoken to me in years because of this very reason, they just don’t know what to do. I have supposedly ‘close’ friends who can only mutter a word or two… on occasion. They might wish me HappyRead More →