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 theRead More →

This is part 9 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 2000 – This photo was taken a week before his 4th birthday. This was right after a bandage change. I took a little break before wrapping his hands, Nicky was still upset from the ordeal, I wanted him to relax a little. I hated inflicting all this pain to my son, as I still do to this day. But what else couldRead More →

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”Read More →

This 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 toldRead More →

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 tellRead More →

This is part 4 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. June 1998 – Nicky on my parent’s balcony in Italy. I was meticulous in keeping his skin covered to prevent new blisters and I used to always try hard to keep his hands protected by putting these gloves on. By then he had permanently lost all his nails, but the gloves didn’t prevent the scarring that would cause the webbing and contracting of the fingers.Read More →

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. April 1998 – Another baptism, this time in Italy in a catholic church. Nicky looked spiffy 🙂 I was happy if only because my whole family was there, including several cousins. That meant a lot to me! Here’s the link on where to purchase the book if interested: http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light, Post Views: 803Read More →

On the Facebook page I have for the book I wrote about my journey raising a child with RDEB called Butterfly Child, I started posting a few images from Nicky’s first years and commenting on either what was going on at the time or explaining things about the picture per se. As time moves on I will move on as Nicky ages. 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. This is the second one I posted in late April and this is what I wrote below: September 1997 – This is the day Nicky got baptized and dedicated at his Nonna’s church (yes, the gorgeous lady next to me is Nicky’s grandma, his dad’s mom!) in Alamogordo (NM). The priest picked him up by his armpits and I just about had a heartRead More →

On the Facebook page I have for the book I wrote about my journey raising a child with RDEB called Butterfly Child, I started posting a few images from Nicky’s first years and commenting on either what was going on at the time or explaining things about the picture per se. As time moves on I will move on as Nicky ages. 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. This is the first one I posted in late April and this is what I wrote below: August 1997 – Nicky was 9 months old in this picture. It was so hard to give him a bath even back then. I resorted in inflating a little soft tub with a towel at the bottom for softness and just doing it in the bedroomRead More →