Blog / Nicky's Life · July 9, 2015

Nicky’s Life Part 6

11174405_354184164779498_9091659556400647032_o_skThis is part 6 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.

April 2000 – Nicky is 3.5 years old here. Wrapping the hands had become second nature. While it didn’t 100% stop the webbing and contracting of the hands (mostly because of all the scarring that happened BEFORE I started wrapping the fingers), it did slow it down considerably. I was talking to Nicky last night about wrapping the hands and he told me I have no idea how much he appreciates what I did for him in my efforts to preserve his hands. That made me so happy… he has no idea how much.

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

Love & Light,



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