Blog / Nicky's Life · September 3, 2015

Nicky’s Life Part 10

This is part 10 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.


2001 – Nicky was 4.5 years old in this photo, just before he started kindergarten. Clothes have always been an issue, even today. There came a point where long sleeves anything (pants or shirts) became impossible to put on. Not only because they were hard to put on per se, but because even in the winter Nicky was always “hot” due to the bandaging. Of course the fact that we lived in the Southwest didn’t really help. Nicky always craved the cold.

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

Love & Light,



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