Ask Nicky (and Connor!) video!

Hello everyone! Here’s video #2 (Video #1 is here) of our series “Ask Nicky”. My son Nicky was born with the Recessive Dystrophic form of Epidermolysis Bullosa. He is 18 now. In this video his brother Connor (11 years old, EB free) is here as well answering questions. If you have any questions for Nicky about his life with EB please leave a comment below. Don’t assume what his life may be like, just ask! We love questions! Thank you so much for caring about Nicky! Love and Light Post Views: 16

Different Realities

Having a child diagnosed with something as bizarre and as rare as EB means living in a world that does not fit the reality of our world at large, even within the EB community. In my life I have struggled, worked hard, I’ve been poor and had bad luck, but this is something that most people could relate to, I never truly felt alone. I knew there were a ton of people out there that worked hard and long hours and still struggled, lived paycheck to paycheck, could not afford things… Even after I lost Alex at full term, I could still find other parents that lost babies. Perhaps the circumstances were different, but the end result wasRead More

Dumbing Down EB

This genetic stuff is confusing, I know! A lot of people do not understand it, they assume EB is an autoimmune condition or Nicky gets rashes etc, so I want to attempt at writing my own version of explaining EB in laymen’s terms. I am a fan of those Dummies books! So, here goes: What is EB? EB stands for Epidermolysis Bullosa (ep-ih-dur-MOL-uh-sis buhl-LOE-sah). Mouthful, no? Most people cannot pronounce it, so most parents and Doctors just use the acronym “EB”. The name is derived from the latin words epidermis (the outer layer of our skin),  lysis (loosening or breakdown) and bullosa (blister). Hence, Epidermolysis Bullosa means the breakdown and blistering of the epidermis. This is all fineRead More

Ask Nicky Video!

A big thank you to those that sent their questions to Nicky! Here’s the video as promised. Connor said he feels left out, so please submit more questions for Nicky and some for Connor too for another video coming soon! Thank you so much for your kindness and for caring about Nicky. Let’s kick EB’s butt! Much Love, Post Views: 18

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

Ask Nicky!

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, NickyRead More

Thanksgiving Blues and Hopes

Yesterday was a particularly tough day for Nicky, and I don’t know if I am getting old or what, but I am still tired from it. We woke up at 5am, left by 6am, drove into Los Angeles during the morning rush hour (never a good thing) which made our trip twice as long as it should have been (3 hours instead of 1.5), then proceeded in having Nicky do hydrotherapy. For those unfamiliar with this, it’s just a pre-medicated ‘good’ bath. A bath where nurses inspect and clean every wound and where the Doctor comes in, checks things out, swabs some wounds and then I completely re-bandage him. Then we drive back home in a rush forRead More

Nicky’s Legs

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 youRead More

The Boy Whose Skin Fell Off

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 otherRead 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

Reminders…

I was looking at this photo in Nicky’s bedroom last night and as I pointed to it, I told Nicky… “Look, weren’t you just simply adorable”? I kept staring at it, and staring at it, marveling how good Nicky looked in this picture, like a normal 9 month old, then I remembered how it was all a lie. You see, it took me months to make sure he had no “big” wounds or scabs on his face, and the moment he looked good I rushed over to Sears. I covered his whole body with a cute outfit (that had been bought for Alex nonetheless) and somehow I was even able to put cute shoes on him, the one andRead More

Butterfly Child

As some of you know, I am writing a book about my son’s life with EB. I subtitled it ‘A Mother’s Story’ because while I try to stay true to Nicky’s feelings and trials, it’s a tale from my prospective, a mother’s prospective, and what I learned during this 18 year journey with my son. I am still working on the book, and it will most likely be done by the time Nicky turns 18 in late November. At that point I will be shopping around for a publisher. I am hoping it can be available sometime in early 2015 at the latest, depending on the publisher, of course. I will keep everyone posted. In the meantime, myRead More

New CaringBridge Blog & EB:Disease or Disorder?

A quick note!  I just updated Nicky’s blog at CaringBridge… I talk about his throat surgery, and lots of good news! Here’s the link! http://www.caringbridge.org/visit/nickyz/journal/ On another note, I’ve been wanting to repost this BLOG I wrote for the EB Info World website about a year ago because it’s still and always will be relevant. Many hugs and Love <3             My son Nicky was merely a week old when a good friend, researching the condition, told me emphatically that EB was definitely a Disorder, not a Disease. It may come to a surprise to many when my inner response to that was like ‘whatever’. “Thank You” I replied to her, and never thought about it again.Read More

Legoland Love & Sad Reflections…

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 theRead More

1/2,381,000

I got hit with a big blow yesterday, one I’ve known all along nonetheless. As the DNA results came back that Nicky did in late April at Stanford to find out if he’s eligible for the skin graft trials, I’ve been trying to decipher them myself. I will talk to the Doctor this week (hopefully) to find out if he’s a candidate, in the meantime through my googling I found out that Nicky does have the “Hallopeau Siemens” subtype, which is, sadly, the worse form of Recessive Dystrophic EB. Yes, he has a nucleotide substitution in exon 109, and the mutation is denoted R2685X at the protein level, which points to RDEB-HS and ONLY to RDEB-HS. Ugh. IRead More

Here’s The Latest…

Nicky’s having a rough time right now. Just when he was able to clear his throat by chocking up a piece of skin-not a pleasant thing, since now he has a wound in his throat that needs to heal-he is now dealing with a big piece of skin torn from going #2. It’s always something. I promise to do a blog at Caringbridge about our trip to Stanford sometime this week-I can never find the time. This is the only morning I have this whole week to do ‘stuff’ and all I did is take care of this blog while I helped Nicky doing various things. Which is why my poor book is written in 15 minutes hereRead More

Please Watch!

Just a quick post! Jodi Champagne, who is the photographer who documented my son Nicky’s life with Epidermolysis Bullosa, was recently interviewed by an online video magazine and this is the interview. Get the Book exclusively at BLURB http://www.blurb.com/b/5024440-courage-under-wraps and on iTunes! https://itunes.apple.com/us/book/courage-under-wraps/id803462653?mt=11 Post Views: 11

You Know You’re An EB Mom When… & What I Need You To Know

I know there are some out there who think they know what the life of an EB mom is like. Maybe you’re an EB (Epidermolysis Bullosa) mom yourself, and this is your truth, but to others, this may be a surprise, or even a revelation. Here’s what my life it’s like from my prospective. You Know You’re An EB mom When…  When you know more than the real doctors do about your child. When you consider internet friends you’ve never met to be some of your best friends. When you think it’s a good day if you don’t see any blood. When you get asked at least once a week if you are a nurse. When your two-year-oldRead More

Let Me Tell Thee How Much I Loathe Medical Insurance Companies

Two years ago it became clear that Nicky’s power chair was on its last leg. The chair was 6 years old and it was literally falling apart. Not only that, Nicky was 9 when he got it, and he was now 15, he barely fit into the thing anymore. The Physical Therapy dept at CHLA started writing referrals to the Insurance company to get a new chair. Nothing happened. Several letters later, several appointments for measurements later, several phone calls to the insurance and a year and a half later, there was still no response, no approval, no denial, no nothing. It was like they were ignoring the whole thing. Last April (2013) at the yearly appointment withRead More

My Boys, Reflections & Realities

I came across this picture of Nicky the other day while transferring photos from one computer to another and I had to stop and admire it. This is Nicky, he was 2.5 years old, with a needle in his hand, poking his own blood blister on his wrist. Just the fact that I could trust Nicky to handle a needle at that age, when I could not dream of giving a needle to my healthy 10 year old today, speaks volumes at the amount of grace, patience & maturity Nicky had to have at such young age. But that is only the tip of the iceberg as far as he’s concerned. Nicky adds a certain family dynamic thatRead More

Under the Bandages

As many of you know, I don’t post photos of Nicky’s wounds on Facebook because they’ve been deleted many times because people “report’ them. I’ve been blocked and my account has even been suspended by my intent to simply show what EB is. People are disturbing and can be quite mean-to say the least. I don’t deal with that well. This is deeply, DEEPLY personal to me. My intent is not to shock or exploit, I would like nothing better to fade into obscurity and live my life as I like and see fit, but my child suffers daily and I can’t make it go away. My wish is to educate and spread the word that this isRead More

Apples & Oranges

I feel the need to vent this morning, so thank you for letting me do that! OK, here goes. A few months ago I posted a blog on the EB Info World website about the crazy notion that Every EB patient is different. I was inspired to write that blog when several well meaning young adults with the same form of EB my son has just could not understand why Nicky could not walk, why he was bandaged so much, and why his skin was different than theirs, even with the same diagnosis. That blog explained my experiences and understanding of how different each patient truly is. Dismissing the fact that every EB patient is different and throwingRead More

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 allRead More

No, I am not Latina ;-) & misc. EB stuff

Good Morning to all my friends. I feel a little chatty this morning, so please indulge me! One of the most interesting assumptions people have about me because I live in the Southwest part of the United States with my name spelled with a ‘i’ instead of the English-ized version of Silvia with a y (Sylvia) is how I must be either Latina or at the very least I must be able to speak Spanish. When I tell them I am Italian I am invariably told that Silvia is a Spanish name. Actually… that is not true. Not only I am Italian, my name is also. Wikipedia lists my name originally as Italian, and it’s also a veryRead More