February 2015

February 24, 2015

Bandages, Smandages

If there was one thing I could say that has been the most frustrating in Nicky’s life with EB when he was younger was dealing with bandages. There was the issue of the cost, where to get them, insurance coverage, what to use, how to wrap, trial and error, the...

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February 19, 2015

Ask Nicky (and Connor!) video!

Hello everyone! Here’s video #2 (Video #1 is here) of our series “Ask Nicky”. My son Nicky was born with the Recessive Dystrophic form of Epidermolysis Bullosa. He is 18 now. In this video his brother Connor (11 years old, EB free) is here as well answering questions. If you...

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February 13, 2015

Different Realities

Having a child diagnosed with something as bizarre and as rare as EB means living in a world that does not fit the reality of our world at large, even within the EB community. In my life I have struggled, worked hard, I’ve been poor and had bad luck, but...

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February 12, 2015

Fed Up!

OK, now that I have your attention… this blog has nothing to do with Nicky or being Fed up with my children, no way! Ok, so I am Fed Up with EB at times, don’t get me wrong, but I adore my children. I will write about my precious ones next...

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February 5, 2015

Dumbing Down EB

This genetic stuff is confusing, I know! A lot of people do not understand it, they assume EB is an autoimmune condition or Nicky gets rashes etc, so I want to attempt at writing my own version of explaining EB in laymen’s terms. I am a fan of those Dummies...

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