I was asked once why I do not use my personal blog to talk about my son or EB, as others do. The answer is a very personal one and a respectful one. I want to keep everything separate. My life is such a roller coaster right now, and has been for nearly two decades, that if I don’t keep my thoughts straight, I might lose my mind. I keep a blog about Nicky, where on occasion I always talkRead More →

I wrote this as a Facebook/MySpace/Blogspot post a couple of years ago-I tweaked it and updated it a bit but I felt this information is worth sharing and keeping ‘out there’ so to speak. There are quite a few family and friends, including some I’ve reconnected with recently, or within the past couple of years who are not sure what Nicky has or what’s going on with his health, so I figured I’d clue everyone in because in the comingRead More →

I was adding a few things to the book I am currently writing about Nicky’s life, which is nowhere near done and I was stunned when I realized I already wrote almost 200 pages, and I have 10+ more years of stories to go. These are not 200 pages filled with overly descriptive anecdotes either, no mist over the window overlooking a tree with owls that made me realize the secret of life, ha ha, these are 200 pages of hard hittingRead More →

Once again I am forced to post these pics on my blog instead of, say, Facebook or caringbridge due to Facebook’s constantly deleting my wound pics and caringbridge not really giving me much space or a way to clearly display these. The detailed blog about the cast removal is here: http://www.caringbridge.org/visit/nickyz/journal Below is the hand carefully re-wrapped by the PT ladies after the cast was removed. He has a splint under to keep the wrist straight and the hand open.   Below is the handRead More →

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, someRead More →

The last week of October marks ‘EB Awareness Week’. It is a time to increase awareness of EB, to promote the need for a cure, and to spur advocacy on behalf of families suffering with the emotional, financial and physical burden of the disease. EB might be rare, there are approximately 600 patients with the same form of EB that my son has in the United States (which is the Recessive Dystrophic form), but its rarity should not deter peopleRead More →