As some of you may know, I’ve been a rather active advocate for EB, or, rather, Epidermolysis Bullosa, my son’s skin disorder, since he was born. I am in the process of writing my book, Butterfly Child, which is the story of my son’s life with EB and I am also using my writing as self therapy. In an essence, I am writing to put his life and his care into prospective, what have I learned? What is the purpose of all of this? What was the toughest lesson and the biggest ha-ha moment?

The book will be out in late 2014, but in the meantime, I was interviewed by It Matters Radio to raise EB Awareness, my interview is about half-way in the show, click below to listen…

Another way I am trying to spread awareness as of late is through graphics. I make these and then I post them on my EB Info World Facebook Page in the hope they will be shared and with them the word will go out that we need a CURE. NOW!!!!

Here’s a few… LIKE the page to see more and to share! We need your help!

rockonEBmom

ebovercome

arguingEB

I promise to do a blog soon about some of the events and things that have been going on. As usual, I have tons of stuff to say and share, but no time to actually do it! Story of my life.

Thank you for your support!

HUGS!

moongirl_silvia

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