This past spring I did something I’ve been wanting to do for a LONG time. I bought the software and the plugs needed so I could transfer all my old VHS tapes and Hi-8 Tapes from my camcorder to my PC so I could make DVDs out of it. I had bought my camera back in 1992, but I had borrowed my BIL’s camera (a cameraman by trade, who even worked for several TV stations) well before then, so I had several videos from the late 80s and early 90s. I didn’t realize this decision would make such impact on Nicky. To be able to see mom and dad before he was born and see videos of himself as a baby and toddler truly gave him a glimpse of things he was unaware of. I have a LONG way to go when it comes to transferring all the videos, butRead More →

With Thanksgiving just a few hours away I’ve been pondering the words of a few relatives lately, relatives that I have a hard time speaking with because joy, thankfulness and looking for the silver lining no matter how dire the situation seems to not be part of their psyche. I would be ok to listen to their complaining if it was seldom, warranted and they took my feelings into consideration, but they never do. Their wining is constant, about small stuff, they offer no support nor recognize my family’s health issues and what’s worse, if I dare say that whatever they are dealing with or dealt with is minute compared to my situation, well, I don’t dare say that. Mainly because it’s not worthed. But… think about it. Would you complain to a child with EB about your scar? Would you complain to a homeless man about your broken living room table?Read More →

In late October 2010, a little over a year ago, I put my heart on a sleeve and vented. My opinions are not those of a politician I chose to believe, or handed down by a parent, since my parents never talked about American Politics and I had no idea how my dad felt about politics until recently; my parents live in Italy BTW. My opinion does not come from a TV channel, newsprogram or a newspaper I chose to believe. My views and opinions come from my PERSONAL experiences. It’s truly as simple as that. My life. Period. I remember vividly when Clinton became president. I couldn’t yet vote, but I wasn’t happy. I had been a big fan of Reagan/Bush (wasn’t everyone?), so the fact that Bush senior didn’t get a second term was inexplicable. I thought he did a great job with Desert Storm and other thingsRead 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, some people draw a line. Why?? Why is it ok to show gruesome things on National TV while the wound of a child suffering from EB is considered offensive and reported as inappropriate? EB Awareness week was just upon us and silly me, thought that to really know what EB ~Epidermolysis Bullosa~ patients live through was to show what is going on under the bandages. A sea of wounds. The reactionRead 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 people from helping in any way they can, even if the only thing they can do is send a tweet or post something on their Facebook wall with a link to one of the main organizations that are looking for a cure, such as Debra (http://www.debra.org/) or the EBMRF (http://ebkids.org/). After all, EB was ranked as one of the ‘worse’ disorders in the world, making the top 10 ‘Hell on Earth’ onRead More →

There are many versions of ‘Beauty and the Beast’, but the main story remains the same. A hideous beast and a beautiful girl fall in love, and when they do it turns out the beast wasn’t a beast at all, but a handsome prince. We learn that the reason the prince was turned into a beast and every single one of the prince’s servants turned into  inanimate objects was because an enchantress, disguised as an old woman, came to his castle seeking shelter on a stormy night. When the prince refused to give her shelter, she revealed her true self and cursed the man for his shallowness by transforming him into a beast. Only true love could turn the prince back to normal. I find it interesting how a simple refusal to give a stranger shelter would result in such a horrible punishment, but I find that in our society today over-reacting onRead More →

In the 1994 film Forrest Gump (one of my favorite movies of all time, no less), during his inexplicable back and forth run across the United States, a bumper sticker salesman running alongside him points out to Forrest that he has just stepped in a pile of dog feces. When Forrest replies, “It happens”, the man replies, “What, shit?”, to which Forrest replies, “Sometimes”. I saw this movie in the theather in the summer of 1994, and while a whole lot of crazy stuff had already happened in my life, mostly due to my sense of adventure and spontaneity, I would soon find out what it really meant to experience some very serious stuff, none of which I was expecting, nor was I at all responsible for. Yes Forrest, you’re absolutely right. $#*! Happens! Just a few months later, my first baby was stillborn at full term, and 18 months afterRead More →

As promised a few months ago, here’s all the Incredimail Letters for American Idol (Seasons 1 through 8 ) that I personally made in ONE collection, ONE download! 8) CLICK HERE 4 DOWNLOAD LINK! I counted 153 roughly. These letters were on this site but since the revamp I had to take them down, so this is the easiest way for me to make them available once again to everyone. The image I made shows a bit of the preview of my work. All my other Incredimail letters (quite a few I made from 2004 to 2010) are on my website at the following URL: http://sleepingangel.com/graphics_im.htm The only ‘Thanks’ I ask is if you follow and LIKE one of my two Facebook pages, the first one EB Info World deals with news, awareness and support for my son’s disorder, Epidermolysis Bullosa. The second one is for my AVON business, ifRead More →