March 2016

March 31, 2016

Nicky’s Life Part 34

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...

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March 30, 2016

What I Want Everyone To Know

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...

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March 29, 2016

Unpredictable

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...

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March 26, 2016

Blog Quotes Part 2

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...

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March 24, 2016

Nicky’s Life Part 33

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...

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March 23, 2016

Hope Against Hope

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...

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March 22, 2016

Daisy

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...

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March 21, 2016

Alex’s Video

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....

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March 15, 2016

Where’s Your Tan?

Having grown up in Italy, where just about everyone I know goes to the beach to get a tan for a week or more during the summer, my pale skin was always something I had to defend. Even when I spent a week at the beach with my parents in...

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March 13, 2016

Blog Quotes Part 1

This is the first of what will eventually be many posts over the next several months or longer of quotes pulled right out of this blog of mine. Feel free to save them and share! To save the bigger version of the image, click on the image first to load it,...

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March 11, 2016

Until It Happens To You

I have to admit I only heard the song by Lady Gaga “Until It Happens to You” when I saw her perform it at the “Oscars” this year. It was amazing. It was amazing especially since I wrote a blog awhile back about this particular… shall I say… “flaw” in...

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March 10, 2016

Nicky’s Life Part 32

October 2003 – Nicky was almost 7 years old when Connor was born. He used to love to just look at him. At times I would put Connor in his bouncer next to Nicky so he could talk and play with him. They were so cute! It’s hard to believe...

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March 9, 2016

Personal Decisions

For many years now I often had people that care about Nicky telling me about or asking me why he hasn’t had a Bone Marrow Transplant. While I wrote in the book extensively about Nicky’s decision (because, make no mistake, he is in charge of his body and I’ve told...

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March 7, 2016

My Meaning of Success

Success means many different things to many different people. Some people associate success with money, tons of money. Some people associate success with having things, lots of things. Some people associate success with having a glorious career, or even fame. I used to think that way too. I worked hard...

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