This was an important week for Epidermolysis Bullosa Awareness. An article about a boy in Germany that was treated with skin grafts from Dr. De Luca in Italy is making the rounds around the world. (Here’s the link for the CNN article). The original research article that was published on Wednesday (the link is here) explains how it was all done. It’s complicated stuff, but here’s a quote from the CNN article that explains how it works: To obtain theRead More →

A few weeks ago I read a comment from someone stating how great the advancements for a cure for EB were coming along and how they were happy to wait. I just bowed my head. Just in the past couple of years so many children with EB, similar to Nicky and many even younger than him, have passed away, that this comment of being “fine with waiting” and “we’ll get there eventually” just upset me. I am sorry, call meRead More →

Apparently the past 18 years I had my head completely in the sand. The cure for EB was in my cupboard! Who knew? Instead of putting fancy creams, or high tech bandaging and wound healing products, I should have just covered Nicky’s wounds with potato skins and cooked onions and mushed them up good enough to go into his g-tube and… woop, bye-bye EB. If only it was so simple. I am not sure why, over the years, explaining EBRead More →

I wanted to take a moment to thank everyone that left very sweet comments on my Caringbridge post (dated November 2013). The guestbook does not give me an option to reply, so, to all that did leave me sweet messages, thank you. In time of need I know I have friends that really care and that means a lot to me, so, THANK YOU! OK, since yesterday afternoon there are GOOD news and BAD news. I will start with theRead More →

Imagine… for a moment, being so thrilled about finally having that baby you longed for so long. This is 21 months after the unimaginable happened, when you had to bury your first baby, being told, in a little room in a hospital, that your second newborn would most likely not reach his first birthday. Imagine being told that there is no cure, no treatment, all you have to do is instantly be transformed into a nurse, insurance not paying forRead More →