Tag Archives: ebmrf

Courage Under Wraps

0 Comment

For the past year my new friend and fabulous photographer Jodi Champagne, has been documenting my son’s life as it is. My son’s name is Nicholas Zahorcak, we call him ‘Nicky’. He was diagnosed shortly after birth with the Recessive Dystrophic form of Epidermolysis Bullosa. Jodi photographed us doing bandage changes, during trips to the various…

Read More

The heart of research…finding a cure for EB

0 Comment

By Christie Zink From her Blog: I Refuse EB *************************** Epidermolysis Bullosa…I remember the first time I ever came across those words.  I did not realize at the time that those words would impact me so profoundly.  It was late at night and I happened to see the link to a blog on a Facebook page that I had started…

Read More