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Hello and thanks for stopping by.  This site is about my 13-year old daughter Sarah and her life with a rare and life-threatening skin disorder called Epidermolysis Bullosa (EB).  EB has been ranked as one of the Top 10 "Hell on Earth" diseases/disorders. 

I hope that this site will give people an understanding of what a child living with this unfair and horrific disorder goes through every day of her life. 

You will also see, in spite of all the difficulties, the joy that my courageous daughter has brought to my life and the special bond that we share.

It is a window into our world. 

Children with EB are called "Butterfly Children" because their skin is as fragile as a butterfly's wing.  I hope that each time you see a butterfly, you will be reminded of Sarah and the other children afflicted with this cruel illness.

 
** Click on the link below to read my article that was just published in the DebRA website! **
'Retrover la lumiere' by Mario Duguay
"Retrover la lumiere" by Mario Duguay
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