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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. Like 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. I
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! 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. 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. Here are a few more favorites: My favorite song: Living
on a Prayer Here's to never ending BON JOVI music. The soundtrack of my life.
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 protein,
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. 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.
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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