This is part 5 of an infinite series of photos I am posting on the Facebook page I have for the book I wrote about my journey raising a child with RDEB 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.
Summer 1999 – Nicky was 2.5 years old here. This is about the time I started taking photos of Nicky’s blisters, and I only did that so I could accurately explain what was going on. By then, so many were trying to minimize Nicky’s condition, stating that they got “blisters” or wondering if Nicky got rashes, comparing it to severe eczema. No, I would tell them. This is a blister that grows and grows and leaves behind a deep wound… so I started taking photos. EB is one of those conditions that needs to be seen to be understood. Nicky still gets these, always.
Here’s the link on where to purchase the book if interested:
Love & Light,