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January 2009 – Nicky was 12 years old in this picture showing his “talent”, LOL. He can’t really keep his legs straight to walk, but he sure can do other things… crazy! More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Follow Comments
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I came across a blog yesterday that I could truly relate to. It was about a mom adjusting to her special needs daughter transitioning from “childhood” to “adulthood” after graduation. In her blog she states she learned 5 things about this new stage of her life as a parent of an adult with multiple disabilities, …
“Losing a baby at birth, followed by a
As I explained quite thoroughly (I hope) in my blog “Dumbing Down EB“, EB varies quite a bit. There are forms that are lethal to babies, forms that get better with age, forms that get worse with age; each form of EB has several subtypes, which can all vary wildly. This is why when other patients …
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… because taking photos of beautiful things makes me happy! Enjoy!   Love & Light, Follow Comments
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As many of you know I read a LOT of books. And in my humble opinion I don’t read enough! But I wanted to take 5 minutes out of my day to let everyone know about this particular book I am reading right now because it’s really, really inspirational. I came across this book about …
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On my radio show/podcast yesterday I tried… or, rather, attempted, to illustrate the genetics involving EB in a fun way, evoking the dormant (sleeping) recessive gene and wishing it could sleep more often. Alas, genetics are hard to explain. While after nearly 20 years I am on a weekly basis describing the blisters Nicky gets (and pictures do …
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June 2008 – Nicky was 11 years old in this picture taken at Camp Wonder in Livermore (CA). I started taking Nicky to camp in 2003 when I was pregnant with Connor and we’ve gone every year since. Nicky told me the other day that he’ll go as long as they allow him, “it’s MY …
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As some of you may or may not know, I love photography. Of course I do not get the chance to travel much and when I do I take my son to the various hospitals, so my photographs tend to concentrate on the areas that I see along the way and the little things, flowers …
The Nurse showing me Alex's perfect little foot.
I came across a short movie (23 minutes) the other day, produced by a UK charity called “Abigail Footsteps” called “The Deafening Silence” and I just cannot get it out of my head. I’ve seen other movies depicting… or trying to… show the emotion and devastation of stillbirth, and while they were mostly good, this one, …
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February 2004 – Nicky was 7 years old in this picture with his little brother Connor, who was 6 months old. I love this picture. I can’t help but remember how much Nicky loved his little brother when he was little, he simply adored him. Of course their relationship has changed over the years and …
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It has been said that opinions are like… ahem…(feel free to fill in the blank)… everyone has one. We all know that well, don’t we? I came across a blog just today that explains people in similar positions as mine that go through exactly this. Let me give you a couple of the examples they give: What …
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Ever since Nicky graduated from High School, one of these questions seems to be on everyone’s lips: “What is Nicky doing now?”, “What are his plans?”, “Is he going to College?” or a variation of these. The truth is… I don’t know. As a parent of a child who is medically fragile (to say the least), …
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I remember clearly being sick when I had a “regular job”. It was pretty simple, really. I would call in sick and I would stay in bed all day. I even remember with sadness when I left work when I started bleeding when I was 7 weeks pregnant back in late 1995-from there I went …
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August 2007 – Nicky was 10 years old in this picture playing in the fancy fountains with Connor (almost 3) in front of the Royal Palace and Palazzo Madama of Turin, Italy. It was an unforgettable trip we took to celebrate my parent’s 50th anniversary. I saved money for years to make sure I could …
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I was recently asked the following question by a reporter: “What do you want others to know about genetic disorders and the challenges individuals who have them and their families face?” So I wanted to share my answer here: I think the foremost thing I would like people to know about EB in general is …
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When I was a 15 years old, in late 1979, I started a diary that changed my life. I was a very shy teenager, I had friends, but I was neither popular, nor confident, so I used this medium to vent in good ways and bad ways and it helped me understand myself. Let’s face …
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Feel free to save them and share! To save the bigger version of the image, click on the image first to load it, then right click to save image. Nicky in the end is my ultimate teacher. It’s because of his lack of bitterness, lack of hate, lack of negative thoughts, that I am becoming …
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October 31, 1998 – Nicky was almost 2 years old on his 2nd Halloween. I decided to take him Trick-or-Treating at the mall and when we passed the Toy Store they had a new toy available, the Teletubbies dolls. Nicky LOVED the Teletubbies! He was in awe looking at the display. Lala & Po (and …
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I was speaking to a dear relative of mine a few weeks ago, and after I told her about Nicky’s antibodies issues that very well might prevent any cure that comes his way because his body will automatically reject it by “fighting” the new collagen that’s introduced, she asked me quite curiously how I can still …
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You know there is a major dent being made into EB Awareness when movies are now being produced to bring forth awareness! This is HUGE in my book! GIGANTIC!!! The first movie, released in 2014, was called “Butterfly Girl” and was a documentary-style movie about the real life story of Abbie Evans. More info HERE and the movie …
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I made this video for my online “baby loss” support group 20 years ago. We all made videos to “swap around” with other grieving moms to help each other out. I put the highlights of my pregnancy with Alex, the delivery and the funeral and I put it to music. I am still not sure …