It’s EB Awareness week and I wanted something to illustrate EB without being “graphic”, so I decided to read an excerpt from my book, “Butterfly Child“.
This is the beginning of Chapter 4, when we took Nicky home from the hospital. Here I describe the first month of having Nicky home and our challenges and learning curve. It’s truly quite descriptive. If you wanted anyone to learn about what it’s like to have an EB baby, this is what you need to share!!!
Please note, I am not a “voice artist” and I do have an accent, but these are my words I am reading, so I did the best I could.
Thank you for listening, and please take a peek at the EBMRF (ebkids.org) and Debra (debra.org) websites to learn more about EB.
Love & Light
~Silvia
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