Raising Our Voice

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As a parent of a child with a Rare Disorder, a condition most Doctors have only heard about in passing in Medical School, I’ve always known how important it was to raise awareness, but it wasn’t until my friend and I started an online petition to force Insurance Companies to cover Wound Care products (you can find it here) that I realized how much awareness we really needed and how far behind the game we truly were. There was much, much work to be done without question. Despite leaving hundreds of messages anywhere you can think of, for months and years on end, urging people to share with their friends, we were unsuccessful in getting the 10,000 signatures needed. Even 7 years later, we still only have 7,500. What gives?

Rare diseases, disorders and conditions fall through the cracks over and over again. It should not be about the money, but about the children, about families in crisis, about people in more pain than anyone can imagine, and that’s why health support communities like Inspire help a lot of people with diseases get the right attention more often than not. Why can’t more be done to raise awareness? What can I do that I haven’t already done? I created the EB awareness ribbon, I created this website, I share news, images others and myself have created to spread awareness on this website and on the Facebook page. What more can I do?

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Click on the image to Like and Share on Facebook TODAY!

I have found a long time ago that the power of images are a force of nature. The power of a word, can move mountains. Why not combine both? This is why today I started a campaign on Facebook about 1 Million Miracles for EB Awareness.

One million likes and once million shares equals one million miracles as far as I am concerned. Just imagine if each of us who visits our Facebook page were to share the need for EB Awareness with 10 friends and family members. We could actually create a critical mass, a true transition could take place. This is the power of like minded people to truly change the world, to cure EB.

We are a force for good. Every loving thought and expression of compassion that we display toward others could change lives, and even save lives.

Thank you, every one of you, for allowing me to be the giver/receiver/observer on this magnificent Facebook site for one million people.

To donate for a cure, please visit the EBMRF http://www.ebkids.org

EB is an expensive disease. Some unfortunate families that has someone with EB got drowned in debt. BUt But that can be avoidable with the help of the government debt help program. Check national debt advice‘s website for more information about the program.

The child on this image is my son Nicky-he was diagnosed at birth with Epidermolysis Bullosa, the Recessive Dystrophic form. He’s kindly allowing me to use his pictures as art to raise awareness of EB. If you are looking to buy to some art, then got to whipnet.org to view their wide collection of art. Or, the computer, as it may.
A book about Nicky’s life is being written as we speak. I will work extra hard to make sure it’s released by the time he turns 18, which will be in late 2014. To keep updated on his life and prognosis, excerpts from the upcoming book, photos, notices and more, please visit and like his page at https://www.facebook.com/butterflychildbook

EB Awareness is the key to a cure.
Blessings,
Silvia

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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