Blog · January 13, 2014

Thank You for Caring <3

I must admit, it’s not easy for me to post photos of Nicky’s wounds. When I do, I put them here on my blog so there is no chance of them getting deleted by some jerk who thinks I am exploiting my child. When this happens, and I was called this just recently, I am deeply hurt. Then again, these people who are so quick to judge, don’t have a rare disease nobody cares or knows anything about.

I have to say I am developing a thick skin about people’s judgement. Long gone are the days where I could not sleep because of someone’s words cutting me deep. They still hurt, but I have to put it all into prospective, consider the source. Ignorance plays a big role, people that are ignorant of your troubles are so quick to judge and dismiss. It’s very sad, but I am not losing sleep over it anymore.


Nicky got this whopper of a blister the other day and I was really upset about it because I had just gotten his foot completely healed after 24 months of struggling. I just wanted to cry. Nicky saw it and was pretty upset as well. I took a photo of it, then I had an internal debate if I should post it or not. The truth is that when I say ‘blister’ most people think it’s this little thing, maybe as big as a nail. Nicky’s blisters are so huge, this one takes up half the foot.  This picture does not even show what it looked on the other side, it was just as big! When I poked this monster, we filled several tissues with the serum that leaked out. How do I explain what Nicky endures better than showing it? How are people going to understand if they don’t see? It’s an internal struggle I have all the time.

I’d like to take this opportunity to dispel some myths if I may. Nicky is 17 years old now, a young man with opinions and capable of making his own decisions. He cares little if none that I post these pictures. As a matter of fact, he *wants* me to post these!


When Jodi Champagne came over to photograph his life with EB (See the finished work here, titled COURAGE UNDER WRAPS), he was amazed that anyone cared. How sad is this, that a young man with a horrible condition is amazed when someone shows they care? It is what it is, and I am certain he’s not alone in feeling this way. Young adults with EB live incredibly tough lives, the more severe the forms, the tougher their struggle. They may want and need their independence, however they may not be able to distance themselves from their families because of their need of daily wound care and one must imagine how tough it is to do the most mundane things. The mundane things everyone takes for granted. Getting dressed, open the fridge, walking…

Our motto is, and has always been ‘heal, heal, heal’! The less wound mass he has, the less infections, the threat of skin cancer gone etc. Since infections are the cause of so many problems, which include failure of internal organs, we’ve always been paranoid about wrapping until the wounds are completely healed. I know other don’t like the wrapping, and that is fine, we all do what works best for us. Every EB patient is different, don’t let anyone tell you otherwise.

In the end, thank you for coming here, to want to see what Nicky goes through, to learn about EB. Above, Nicky just a few minutes after midnight. He had just a few sips of Sparkling Apple Cider before he handed the glass over to me. His drink of choice is usually milk!

Love and Light,