Blog

October 24, 2016

EB Awareness Week 2016

I know I am beating the drum of Epidermolysis Bullosa Awareness every single day, especially on my ebinfoworld.com facebook page, but this cause is very close to my heart and it really needs everyone’s attention. There are so many conditions on this planet, many of them rare, and it’s hard...

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October 21, 2016

October is Pregnancy & Infant Loss Awareness Month

I can’t let October go by without posting at least “something” regarding either my experience with Pregnancy Loss or at the very least offer my thoughts on the matter either on how I feel more than 2 decades after my loss or the state of Awareness. Am I and are...

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October 20, 2016

Nicky’s Life Part 47

August 1997 – Nicky and I on our way to my anniversary dinner…. Nicky looks so spiffy, but despite the smiles, behind the scenes, I was a mess. At this point I was taking Nicky to the Physical Therapist twice a week and she became sort of a confidant; I...

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October 18, 2016

Blog Quotes Part 9

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. Believe me when I tell you, never in a million years I could possibly exaggerate Nicky’s condition. I became the parent...

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October 16, 2016

Epidermolysis Bullosa by the Numbers

As EB Awareness week is approaching, I always hear the “numbers” of EB being floated around. One official website states the incidence of EB  is 1 out of every 20,000 births. Another official website states One in about 17,000 live births. Yet another official website states 1 in 50,000. The truth is,...

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October 13, 2016

Raise Your Standards

I am a very spiritual person. I grew up catholic and I have attended service at many different churches from many different denominations, mostly to satisfy my curiosity, so I am very well aware of how incredibly sensitive this issue of religion is. Your beliefs are important and they should...

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October 6, 2016

Nicky’s Life Part 46

March 2001 – I was thinking about this picture just the other day when we were driving back from Stanford and I was so happy to find it. Isn’t Nicky cute? “Casa De Fruta” used to be just a big fruit stand, now it’s a mini-amusement park, complete with a...

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October 4, 2016

Strength

If there is a sentence I hear a lot from family and friends in general is how “strong” I am. Before the stillbirth of my first baby, before the miscarriage, before Nicky’s birth, I somehow thought that strength had something to do with “grin and bear it”, or having somehow...

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September 30, 2016

A Work In Progress

Every person in the world has known heartache and suffering. Sometimes I think about the children with my son’s condition that live in third world countries, or countries like Syria, ravaged by war. There are so many people on our beloved planet that do not have the basic necessities, water,...

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September 29, 2016

Nicky’s Life Part 45

September 1997 – I love this picture of 10 month old Nicky with his dad, if only because of those BIG blue eyes! His poor mouth was in bad shape, he had already stopped eating baby food at this point and could only ingest liquids. On occasion he could chew...

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September 26, 2016

Speechless

Minnie Driver is probably my favorite actress nowadays. A few years ago she tackled a subject near and dear to my heart by portraying a mother who had a stillborn baby in “Return to Zero“. Her performance was simply phenomenal. She totally nailed it. Her character’s  experience was also fairly...

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September 23, 2016

How to Be Kind to a Caregiver

Caregivers are selfless and do what they do because they love the person they care for, most often without monetary compensation. If you know a caregiver and want to show your appreciation, here are some ideas: Encourage him or her to relax by a gift of bubble bath items Pay...

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September 22, 2016

Nicky’s Life Part 44

December 2008 – Nicky in his Mecca! He was 12 years old in this picture at a GameStop at the Antelope Valley Mall. When Nicky was 4 years old I bought an old SuperNintendo so I could teach him to play Mario Kart; I loved that game! I thought that...

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September 20, 2016

Blog Quotes Part 8

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. But in this lifetime, my purpose is my son. My purpose is to raise awareness for this awful thing we live...

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