So many things to talk about! 1. I have an AMAZON GIVEAWAY going on! if you haven’t already, please enter and share, you can win my book “Butterfly Child”. Who will be the lucky person??? The giveaway will be active until the 22nd, so I hope someone by then wins the darn thing. Enter Now by following THIS LINK. Follow me on Twitter and Retweet please! Thank you! I will have giveaways on different platforms as time allows, on GoodReads for example, and I am researching others as well, so if you don’t win this one, don’t fret, there will be another one coming soon. 2. My next Podcast of “Butterfly Talk” is scheduled for April 21st at 3:30pm. My Special Guest will be Lorraine Spaulding, EB mom extraordinaire and always leading the way for EB awareness! She started Montello Fine Foods with her son Garrett 18, RDEB, and we will talk aboutRead More →

Good morning everyone!!! My book is now LIVE finally from the publisher’s website! Woot! Here’s some links for you! Paperback: The only way to get the book on paperback right this moment is through the publisher:…/butte…/paperback/product-22092004.html It will take a few weeks to “show up” on Amazon and Barnes and Noble, when it does, I will post the link. If you were interested in a “signed” copy from me, I will have a few available (for those within the US only) in a couple of weeks or so on my website. I wanted to keep the price low but this is a big thick book and it’s not cheap to print. I am sorry. To make it up to you, here’s some coupon codes websites: & eBook versions: As of today you can get the ebook at both the publisher’s website:…/butterfly…/ebook/product-22097219.html and iTunes:…/book/butterfly-child/id979932054… As soon as itRead More →

A little update on the book… I am still waiting for a few replies from literary agents… not sure I want to wait much longer. I initiated the process with Lulu, so I am formatting the book to their standards as we speak. I wish I knew someone famous that could get me this book published in a more broad way. Oh well. I guess my real job will be marketing it as much as possible from now on. I will keep everyone posted. HUGS <3 Love & Light, Post Views: 794Read More →

As of yesterday, my book Butterfly Child is officially done. I cried a thousand tears writing this memoir, which encompasses the past 20 years of my life. As of right now I am doing a final re-read, going through every page with a fine tooth-comb, making sure the grammar is top notch. I want to make sure it’s perfect. I am hopeful I can be done and I can make it available by mid-February. I’ve thought long and hard how to market/publish this book, and if anyone has any info, suggestions or advice, please do pass it along. I am open to anything. Worse comes to worse there is always Lulu… it has served me well in the past. Thank you everyone for your support, and please like the page below… it would mean the world to me. I will post more excerpts from the book and misc stuff. IRead More →

A big thank you to those that sent their questions to Nicky! Here’s the video as promised. Connor said he feels left out, so please submit more questions for Nicky and some for Connor too for another video coming soon! Thank you so much for your kindness and for caring about Nicky. Let’s kick EB’s butt! Much Love, Post Views: 884Read More →

As some of you know, I am writing a book about my son’s life with EB. I subtitled it ‘A Mother’s Story’ because while I try to stay true to Nicky’s feelings and trials, it’s a tale from my prospective, a mother’s prospective, and what I learned during this 18 year journey with my son. I am still working on the book, and it will most likely be done by the time Nicky turns 18 in late November. At that point I will be shopping around for a publisher. I am hoping it can be available sometime in early 2015 at the latest, depending on the publisher, of course. I will keep everyone posted. In the meantime, my simple request is to please go and like the Facebook Page I made for the book now. It includes excerpts from the book and various photos of Nicky when he was little. IRead More →

Two years ago it became clear that Nicky’s power chair was on its last leg. The chair was 6 years old and it was literally falling apart. Not only that, Nicky was 9 when he got it, and he was now 15, he barely fit into the thing anymore. The Physical Therapy dept at CHLA started writing referrals to the Insurance company to get a new chair. Nothing happened. Several letters later, several appointments for measurements later, several phone calls to the insurance and a year and a half later, there was still no response, no approval, no denial, no nothing. It was like they were ignoring the whole thing. Last April (2013) at the yearly appointment with the Pediatrician, she stated to me that the referral had to come from ‘her’ for the Insurance to even ‘look’ at it. Well, I wish someone… anyone really, would have told meRead More →

There seem to be a little confusion on what books are being made right now about Nicky, so I am here to clear things up a bit. Nicky is, of course, my son. He was diagnosed at birth with Epidermolysis Bullosa, the Recessive Dystrophic form. As devastating as this diagnose was at the time, it’s hard to explain in a few words what it means to raise a child in constant pain, whose condition is considered terminal, a condition whose the medical community is oblivious about and whose insurance companies discriminated against from the very beginning. When Nicky was born 16 years ago, I felt helpless and hopeless. I was told Nicky would never see his first birthday. Considering we had to bury our firstborn a mere 18 months earlier, I am not sure I can convey the heartache our family endured. After all these years, I feel that notRead More →