Blog / Nicky's Life · August 13, 2015

Nicky’s Life Part 8

This is part 8 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.


November 2001 – Nicky was always my little ham when he was little. He started playing videogames when he was 4.5 years old and never stopped. If there was one thing that I could say that is keeping him alive at this point is his love of playing. I feel a little down this AM, so please accept my apologies. Nicky’s ability to “move” has deteriorated quite a bit in the past few years. He hasn’t walked now since late 2011. Every step is excruciating. So many well-wishers often tell us they hope he’ll be OK soon. The truth is, RDEB is degenerative. It gets worse and worse with age. He won’t be OK soon or ever unless a cure is found.

Despite it all, Nicky is always smiling, laughing, loving…

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

Love & Light,



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