Epidermolysis Bullosa is not a Life Choice. It’s Real & it’s Hard.

Last night, during a bandage change, I barely touched Nicky’s feet and he yelled in pain. I wasn’t touching a wound, mind you, I was simply “gently” feeling his skin. His feet nowadays are mostly healed, and they have been healed for sometime, they really look beautiful all in all, so I was a little perturbed. In truth, for the past several months – or years – Nicky won’t let me touch his feet at all. If there is a wound or a scab to clean or anything else he insists on cleaning it himself. I don’t mind at all, yes, please do it, ha ha. I asked him what is the matter with his feet though, andRead More

From Defensive to Educational

As I explained quite thoroughly (I hope) in my blog “Dumbing Down EB“, EB varies quite a bit. There are forms that are lethal to babies, forms that get better with age, forms that get worse with age; each form of EB has several subtypes, which can all vary wildly. This is why when other patients with similar forms of EB as my son “question” what he goes through, I get a bit… shall I say… defensive. I think to myself: “Do they think I am lying?” Believe me when I tell you, I never exaggerate, and to be truthful, many times my explanations only tell the tip of the iceberg. I try, really try not to think this way,Read More

Daisy

You know there is a major dent being made into EB Awareness when movies are now being produced to bring forth awareness! This is HUGE in my book! GIGANTIC!!! The first movie, released in 2014, was called “Butterfly Girl” and was a documentary-style movie about the real life story of Abbie Evans. More info HERE and the movie can be downloaded via iTunes, Amazon, & YouTube. There was, of course, My Flesh & Blood back in 2001, a documentary about the life of Susan Tom, which I am humbled to call a friend, and her many adopted children, 2 of which had RDEB like my son. There are two other movies in production that I am aware of. The first one is calledRead More

The Importance of EB Awareness

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 remember vividly one day over 10 years ago (probably more like 12 or 13) driving to Children Hospital Los Angeles to see a particular Doctor/Dermatologist for Nicky who, I was told, was at least ‘familiar’ with EB. Nicky had some issues, I forgot what, and I made it a point that day to drive 90 minutes to see this particular Doctor. However, on our way we encounteredRead More

Giant Leaps for EB Awareness

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, the book ‘Courage Under Wraps‘ by Jodi Champagne, depicting Nicky’s Life with EB was released, which led to the FOX11 coverage of it called ‘A Rare Condition‘. Because of all of this coverage, Nicky’s Facebook Page swelled with likes, words of encouragement and so much love. I honestly feel like it saved me in so many ways. So many took it upon themselves to do fundraisers for NickyRead More

EB Awareness

It always humbles me when anyone is inspired, cares, and takes a special interest about the devastating condition my son was born with, Recessive Dystrophic Epidermolysis Bullosa. For so many years we felt so abandoned. Nicky always thought nobody cared. I’ve always tried to change that and for so many years I tried my best to make this little known disorder known, but many things in our lives we cannot do alone. We needed help. Jodi Champagne was the first person that wanted to make a difference for us. I met her while taking a class at the local College. She came in to speak to us and I felt a special connection immediately. It wasn’t until aRead More

Courage Under Wraps Gallery Opening

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/Read More

My Radio Interview & Other Musings

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, myRead More

EB Awareness Week 2012

I always found it ironic that the last day of EB Awareness Week falls on Halloween Day. After all, for many EB Children and Adults, being covered in gauze is a daily routine, not a once-a-year costume. I further wish I could say that I liked Mummy costumes or that I would ever dress myself or any my sons like that, including my son with EB, but I often felt a bit uneasy about it. No thanks. I hate gauze. Really, I mean it, I HATE gauze. Gauze to me, and more so to my son, represents that thing that we have to cover wounds with. Those nasty, painful, bloody wounds that make my son’s life miserable. They represent whatRead More

Fighting Double Standards

If you’ve ever watched an episode of CSI you’ve seen gruesome stuff. You would have seen the re-enactments of a murder, how a knife or a bullett entered the victim’s body, or the doctor performing biopsies. You would have seen hearts or brains being handled, throats slashed and worms devouring a cadaver. We’ve even seen a body being swallowed by a python-and then regurgitated. It’s all good and fine when it’s for entertainment purposes, but when it comes to reality, some people draw a line. Why?? Why is it ok to show gruesome things on National TV while the wound of a child suffering from EB is considered offensive and reported as inappropriate? EB Awareness week was just uponRead More