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This is part 7 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. March 2000 – Nicky is 3.5 years old here in this photo taken at Lucile Packard Children Hospital @ Stanford as we were getting him ready for his first throat dilatation/g-tube placement. It was a decision that was hard to make, but in the end his failure to thrive made it impossible to do “nothing”. At 3.5 years old he only weighed 21lb.Read More →

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Just before my 30th birthday I found out I was pregnant with my first baby. All my friends were already mothers and I had wanted a baby for so long that this pregnancy ended up being something surreal. I walked on air for the entire 9 months, it truly was Unicorns and Rainbows all the way. I was so happy. Then, the unthinkable happened. The day he was due, February 26th, 1995, I could not feel him move at all, not even when I ate something cold as he normally did, all my tricks to make him move failed and I was worried. The thought that he had died never entered my mind, however. The next morning, a Monday, I went to the Doctor’s office to check things out and that’s where we found out Alex had died in utero. There are no words to explain how I felt thatRead More →

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Love seeing all your pics reading ‪#‎butterflychild‬! It’s the perfect summer read! Thank you SO MUCH for sharing these Cristina Battaglin, Dianna Floyd & Molly Holm!! Please share yours with me~! Thank you and Happy Summer!! Post Views: 998Read More →

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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 →

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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 →

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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: 973Read More →

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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 →

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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 →