It has become apparent over the years that 9 times out of 10, when Nicky tells me his foot is really “bad”, I need to brace myself. This is what I braced myself for a couple of weeks ago… After I took off the bandages, big areas of skin just started peeling off the top of the foot. I wanted to show this picture because I wanted to illustrate how fragile Nicky’s skin is… it does not even blister anymore in some areas, it just peels off like this. If he has a crust anywhere it will actually “cause” more blisters and create bloody areas too. The crusts dig in the good skin and create more damage. As he puts just a little pressure to take a step, it “moves” the skin and create even more damage. Nicky took matters in his own hands and started cutting off the peelingRead More →

I updated my Caringbridge Blog today (here’s the link–> http://www.caringbridge.org/visit/nickyz/journal/view/id/554ba814f02065dc3614f506) and I also posted a photo on my Butterfly Child Book Facebook Page and I talk about the pain and suffering that Nicky endures. It’s not easy. EB sucks. It’s been two years now since I had to start giving Nicky pain meds basically 24/7 and to me it’s a shock he didn’t need them all day before. He always needed them for bandage changes, but never at any other time. I always asked him what was his pain threshold, and as I write in the book, sometimes I am convinced his body is reacting differently about pain than a regular person, simply because his body is so used to it and has dealt with it since birth. Even when his body wasn’t so ravaged, if I had had the wounds he had, I would have been in hell. Now? IRead More →

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, as the upper thigh is extremely hard to bandage because the bandages themselves shift and move endlessly. I am not posting this to evoke sympathy or pity. I am posting it to open a door into our lives to help others understand, to educate and build acceptance for children and adults living with this condition. Follow Nicky and his journey, living with RDEB here–> https://www.facebook.com/NickyLivingWithEB Los Angeles News | FOX 11 LA KTTV Love & Light, Post Views: 2,353Read More →

I will be done with my book real soon, and then comes the hard part of selling it or self-publish it, we’ll see. However, in the new year, I want Nicky himself to be able to answer questions on a video I will make of him which I will then upload to YouTube. So, ASK away by leaving a message below on the facebook plug-in. Please be kind and sensitive, it’s all I ask. Nicky is truly a trooper, he wants everyone to know about his condition, so we’re gonna run with it. I am hoping to make several videos each perhaps tackling a different subject per se depending on what Nicky is comfortable talking about. Remember, Nicky is 18 years old now, and he has the (Hallopeau Siemens-Severe Generalized) Recessive Dystrophic form of Epidermolysis Bullosa. So… go at it… ASK NICKY!!! Namaste! Post Views: 918Read More →

Here’s the photos I promised yesterday when I updated Nicky’s CaringBridge Blog. Once again, I don’t post these lightly. I cringe a little. But there is truly no other way to show people what EB is. To understand EB. I want people to understand why Nicky is in so much pain. Photos is the only way to show the cruelty of of his condition… Recessive Dystrophic Epidermolysis Bullosa. What you see here is his left foot. His ankle (not shown) was one of the areas that was hurt as a baby and it’s basically always raw. The top of the foot here is very prone to being scratched and is almost always an open wound. The ‘white’ residue you see is what remains from our ‘concoction’ we use on his wounds to speed up optimum healing, made of a mixture of Desitin (or any 40% zinc diaper rash cream), DermaGran, Argan Oil,Read More →

Ten years ago a documentary aired that I am yet to show Nicky and not sure I ever will.  I wasn’t even able to watch the whole thing in one sitting, I kept crying buckets and it took me three sittings to finish it. I guess you could say it hit a bit too close to home. The story was about a man with the same form of EB as my son and his final months of life as he purchases a casket and attends fundraisers, is interviewed etc., after he was diagnosed with skin cancer. Knowing he would not live long, he wanted this documentary to raise EB awareness. The documentary is widely available on YouTube and other venues nowadays, and a little over a year ago, after I finished reading the book that accompanied the documentary, I decided to watch it again, alas… it wasn’t any easier to. OnceRead More →

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 Nicky to get him a new chair and other medical and non-medical needs, Jodi and her husband helped to remake his bedroom, his dad’s work decided to commit themselves to EB Awareness andRead More →

This past week we were fortunate enough to visit Legoland-a friend who did a fundraiser for us bought us the tickets, of which I will forever be grateful. I wish I could convey in words how much fun Nicky had in this trip and how nice everyone was to us everywhere we went. For starters, I must say that Nicky has gotten quite hurt in the past when doing rides so he always refused to do the ‘crazy’ ones (as he called them) at Disneyland & Universal Studios. By crazy ones I must specifically mention ‘Space Mountain’ & ‘Matterhorn’ at Disneyland and the ‘Mummy’ ride at Universal Studios. He wants and tries all he can, but sometimes the hardest part is not the ride itself but getting INTO the car/boat or whatever that may be. This time, however, I saw a different Nicky. The rides at Legoland are milder sinceRead More →