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About Me

This website came together as a tribute and my absolute devotion for a Rock and Roll band that has inspired me for the past 20+ years and has made my life a little easier to deal with. I am also taking this opportunity to raise awareness about my son's devastating and lethal skin disorder called Epidermolysis Bullosa, EB. EB is a very rare and extremely painful condition where the patients literally lose skin at the slightest scratch or bump. Even a mother's cuddle can be painful. More on this condition at the bottom of this page.

My name is Silvia, I am a 43 year old mother of an Angel in Heaven named Alex, and an Angel on Earth named Nicky, who is afflicted with this devastating skin condition. I also was blessed with a healthy baby in the summer 2003. Connor is definitely an earth angel as well. I am also Greg's princess :-)

Ahhhhh... BON JOVI. I thank God every day that they exist. Bon Jovi is my little obsession. I basically 'worship' this group for all the wonderful music and how they enhanced my life.

I love music, I used to be a DJ long ago (in my teens) and I own hundreds of CDs, but there is nothing that is more special to me than listening and seeing the boys from 'Jersey'. My first introduction to the band and what started it all for me was when I saw a video on MTV in the early eighties called 'She don't know me'. I loved that video and that song, it was sooo 'me'. I did not follow their career too much at this point, but one other song I really liked at the time and still love today is "Silent Night", from their 2nd album, 7800 Fahrenheit.

Bon Jovi... thenLike most people though, at least most people in the U.S., it wasn't until I heard "Living on a Prayer" that I was totally and completely hooked. I used to listen to it all the time, over and over and over again. I never got tired of that song, and I am STILL listening to it. It is a very special song, and my favorite BJ song still.

The follow up album, "New Jersey", was just a continuation of it... every song in the album was fantastic, and a couple of songs I really enjoyed were "Lay your hands on me" and "I'll be there for you". I especially loved the videos. I should point out that at the time my favorite artists were ABBA and Air Supply, so this was quite a departure for me. Bon Jovi introduced me to the pop-metal world, and now I have a quite extensive collection of all the famous or infamous 'hair bands' of the 80s. My favorite music without a doubt. Other music I like nowadays is the rock of Aerosmith and U2, Country music in general and Italian pop music, especially that of Laura Pausini, Paolo Vallesi, Eros Ramazzotti and my all time favorite is a group called 'Collage'. Still, among all this great music, BON JOVI is, without a doubt, my top choice.

Jon... thenI loved Jon's solo soundtrack from Young Guns II, and both the videos from "Blaze of Glory" and "Miracle" were really "WOW". Jon is one of those guys that can look like your next door neighbor (see his 'Sex in the City' character Seth), and then he can put on some tight leather pants (like in the Blaze of Glory video) and can look breathless! I don't know how he does it but.. BLESS HIM! Keep looking sexy for us Jon, we love it!
There is something about Jon I cannot put my finger on. Yes, he's talented, yes, he's incredibly handsome, but it's more than that. It's like I know him from another time and place... there is some sort of connection I cannot explain.
The only other person EVER where I felt the same sort of connection is my husband. I 'knew' there was something different and special about him when I first met him back in 1984. That same exact feeling about knowing him from another time and place... that... connection. We could not get together back then but I never forgot him. Once my marriage ended I found him and we've been inseparable since. Thank God he's not jealous at all about my Bon Jovi obsession, ha ha. He has no reason to anyway. He even downloads Bon Jovi stuff for me, or watches the Bon Jovi concert on TV with me, and was so excited for me when I was able to go to one of their concerts... Bless his heart!

At any rate... where was I... oh yes. After a couple of years "Keep the Faith" came out and it was simply awesome, some of my favorite tracks from that album are "Bed of Roses" and "I'll Sleep when I am dead". 'Keep the Faith' is probably my favorite album, but don't quote me on that, I might change my mind ;-)

The hit 'Always' from their Greatest Hits album is still my favorite BJ's ballad. It is a very intense song, and it was no surprise that it stayed in the top 40 for 6 months! I can listen to it and be completely mesmerized by it while I sing along. Like a drug... very strange.... The only other song that has that effect on me is 'Is this Love' by Whitesnake. If I just sit there and listen to it, I can almost get hypnotized, that's how powerful they are.
The Greatest Hits CD was my first CD that I ever bought of Bon Jovi actually (long story). I probably listen to that more than any other CD.
"These days" was a little departure for them in my view, even more so than from "New Jersey" to "Keep the Faith", not too much pop, more soulful life stories, and it really spoke to me, as at the time I had lost my son Alex (Nicky's older brother, who was stillborn at full term), and life was far from easy, and full of heartache.

Superman..now!After "These Days" I followed Richie Sambora's solo career, I liked the albums, and Jon's movie career as well. I was floored. Here is this gorgeous man, who not only can write hit songs and inspire people, now he can act too! I loved the "Destination Anywhere" album and short film-since I have lost a child I can completely relate to it. And that scene in the end where Demi Moore comes home with the baby... oh boy, I could have been her. Jon was great in "The Leading Man" and I really liked the character he played in "Moonlight and Valentino" :-) What can I say... like I said, Jon is like a magnet for my soul. Whatever he is doing, I gotta see. I am ecstatic that I can now see him in movies. I am particularly moved how he helps charities and he's always doing benefit concerts and the like... perhaps someday I can get word across to him how much we need awareness and money for research for EB (my son's devastating condition)... who knows.

Anyway, it wasn't until I hit 'bottom' as life was harder than ever, as a newly divorced working mother of a disabled child, that their new album came out ("Crush") and it was then I realized that their music had come full circle for me.

Yes, I was a 'Runaway' in the early eighties, as I had just moved from Italy to the U.S. at 18 years of age.
I was 'Living on a Prayer' in the late eighties as I was trying to figure out what I was going to do with my life and money was short.
I was 'Keeping the Faith' as my life took a turn from one career to another and my marriage nearly ended.
I was pondering life very hard when 'These Days' came out, with "Hey God" and other songs who completely fit the mood.
And I am not shouting 'It's MY life', as I took charge of my life after the divorce and I am learning how to cope with life's struggles.
Bon Jovi... now!The culmination for me was when I first saw the video of 'Thank you for loving me'. Not only it was shot in Rome (I was born and raised in Italy), but my now husband is the guy I dated and was so crazy about back in the mid-eighties, and I didn't know if he loved me back then, but he sure loves me now.
Greg, thank you for loving me.

Here are a few more favorites:

My favorite song: Living on a Prayer
My favorite Ballad: Always. Close Second: Thank You for Loving Me
My favorite Album: As of this moment 'Keep the Faith'... but even that is a leap... don't quote me on this, I might change my mind!
My favorite non-Album song: "Stay" is a truly wonderful song. I am not sure how it ended up being relegated as a 'B' side (so to speak) of 'Say It isn't so' and not part of either 'Crush' or a future album, nonetheless, I am happy it was released 'somewhere'. In my view, it could have been a HUGE hit.
My favorite Video: Lay your hands on me.
How many times I've seen them in concert: Twice! :-( One Wild Night Tour 2001, in Anaheim, CA, on April 20, 2001 What an awesome show.. I was smiling for days. Then once again in April 2003 when I was pregnant with my son Connor during their Bounce tour.
My favorite band member: Jon :-)

Here's to never ending BON JOVI music. The soundtrack of my life.

About Epidermolysis Bullosa, EB

To make a complicated condition simple to explain, a certain protein called "collagen", which acts as a glue between the epidermis and the dermis, is missing or the body simply does not produce enough of it. Because the skin is missing this Nicky, 1997protein, blisters develop easily, and skin can peel off at the slightest scratch, bump or pulling. This can occur anywhere on his body, including his eyes, mouth and esophagus.
These wounds are painful, as, in my son's case, are 2nd degree burn-like wounds, and can and will heal with scars. The scars cause deformities of the extremities which lead to disability. Nicky always wears bandages to protect the healthy skin and allow healing of wounded skin. His mouth is severely effected and he can only eat mushy/liquid foods. He has to have a gastronomy tube to make sure he gets enough nutrition.
This condition is not contagious. It is a genetic disorder he was born with when mom and dad, unknowingly healthy carriers, passed the defective genes to him. Unfortunately, there is no cure for EB right now, but many doctors are working to find help for EB.
There are forms of EB where babies die before their first birthday, and others, like Nicky, who will survive 'til their twenties, or thirties, but then usually succumb to an aggressive form of Squamous Cell Carcinoma (Cancer) or can die at anytime from an infection, from severe anemia and a variety of other complications.
EB is rare, and Drs and nurses can work a lifetime without bumping into this condition. This is why we need awareness. To help parents with the enormous task of caring for these children, and to spread the word that a cure is needed, and needed NOW. Please visit my EB Info World website for more information

Here is how you can help!

There are many ways you can help our cause. If you have a website you can 'adopt' the ribbon on the right and put it on your website and link it to EB Info World at http://www.ebinfoworld.com.
There are also two major organizations that are helping EB:
1. DebRA: Dystrophic Epidermolysis Bullosa Research Association (http://www.debra.org)
2. EBMRF: Epidermolysis Bullosa Medical Research Foundation (http://www.ebkids.org).
3. EBAN: Epidermolysis Bullosa Action Network (http://www.ebanusa.org)

A list of these and other things you can do to help our cause are listed here: http://www.ebinfoworld.com/help.htm

Please help to spread awareness and end the suffering of a disorder that is not only painful, but robs children of their childhood and their lives.

Thank you!

This site proudly supports Awareness and Research for Epidermolysis Bullosa.
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