EB Awareness

Jodi with Nicky & Connor under the display
Jodi with Nicky & Connor under the display

It always humbles me when anyone is inspired, cares, and takes a special interest about the devastating condition my son was born with, Recessive Dystrophic Epidermolysis Bullosa. For so many years we felt so abandoned. Nicky always thought nobody cared. I’ve always tried to change that and for so many years I tried my best to make this little known disorder known, but many things in our lives we cannot do alone. We needed help.

Jodi Champagne was the first person that wanted to make a difference for us. I met her while taking a class at the local College. She came in to speak to us and I felt a special connection immediately. It wasn’t until a while later, when she saw photos of Nicky’s wounds I posted on my blog here (Here’s one post titled ‘Under The Bandages‘ and another one of simply ‘Wound Pics‘) that she decided she wanted to do a photographic documentary.
After taking pictures for nearly two years, the book was released in late 2013. You can get the Book exclusively at BLURB http://www.blurb.com/b/5024440-courage-under-wraps and on iTunes! https://itunes.apple.com/us/book/courage-under-wraps/id803462653?mt=11.

Hoping to get the word out about the book was hard as well. It wasn’t until a wonderful reporter, Gina Silvia from the local FOX11 News saw my plea for awareness on twitter that she decided to interview us. I will be forever grateful. THANK YOU GINA!!! <3

Los Angeles Local News | FOX 11 LA KTTV

And of course I can’t forget the amazing Lynn Anderson, who founded the EBMRF and started the research at Stanford to find a cure in the 1990s. The EBMRF was then taken over by Andrea Pett Joseph, who is responsible for getting big names involved. You can read more about Nicky’s birth and more on a blog I wrote called ‘Imagine‘ and another one called ‘The Good & The Bad‘, where I talk about the work going on at Stanford and a star studded fundraiser we attended last summer. Because of this, anyone wondering who to donate to, our choice is the EBMRF (http://www.ebkids.org/), which for many years was (and may still be) the sole contributor for the medical research at Stanford. In fact, we are going to Stanford in 2 weeks for the preliminaries for genetically modified skin grafts which Nicky can have on the clinical trial they started late last year once he turns 18 in November. We are so close to ease the suffering of many with EB, and Nicky can lead the way. Thank you for your support, your prayers and let’s hope we can make even a small dent in raising funds and awareness.

Many Blessings,

moongirl_silvia

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