June 2003 – 6 year old Nicky went to Children’s Skin Disease Foundation/Camp Wonder for the first time and it completely changed his life. Even though Nicky is too old to be a camper now, they made him an honorary counselor, so he can still go. We are enormously thankful, more than we can ever say or even repay. It’s a time for Nicky to spend time with other EB kids and to be with people that truly care and understand EB fully. In this picture… while all the other kids rode the horses, Nicky was too afraid to do that, so he just rode on the little carriage behind it. He loved it! More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 365Read More →

This is part 12 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. May 2002 – At 5 years old, Nicky was wrapped from head to toe, I even put gauze between the toes, I was so paranoid of him losing his hands and feet to webbing and contracting. The only shoes he could wear at this point were slippers. At this time Nicky was going to Kindergarten and was about to graduate. He wasRead More →

This is part 11 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. February 2002 – Nicky was always my smiling ham! He was 5 years old in this photo, which was taken in DisneyWorld (FL) for the “Have a Heart for EB” event. Nicky got to hug and meet all the characters. It’s hard to post just one photo, there are so many of him hugging and being his sweet self with all of them,Read More →

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 →