Blog / Nicky's Life · September 10, 2015

Nicky’s Life Part 11

This is part 11 of an infinite series of photos I am posting on the Facebook page I have for the book I wrote about my journey raising my son with RDEB (Recessive Dystrophic Epidermolysis Bullosa) called Butterfly Child. I am posting a few images from Nicky’s life and commenting on either what was going on at the time or explaining things about the picture per se.

This “picture commentary” will serve as a companion for anyone that is kind enough to purchase and read my book as my appreciation and thanks.


February 2002 – Nicky was always my smiling ham! He was 5 years old in this photo, which was taken in DisneyWorld (FL) for the “Have a Heart for EB” event. Nicky got to hug and meet all the characters. It’s hard to post just one photo, there are so many of him hugging and being his sweet self with all of them, but he had such a huge smile on this one… it’s still my favorite. More on that trip in the book…

Here’s the link on where to purchase the book if interested:

Love & Light,



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